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Ode to a Seizure

And in with all of the useful information on this site, you get the occasional piece of very amateur poetry...

Ode To A Seizure
by Michelle Higgins

Somewhere in the brain a storm begins to lurk
It starts with a tremor and progresses to a jerk.
Normal patterns are as random as can be
But sudden slow rythms show up on EEG.

Seizures you see, come in all kinds
From tonics to clonics they mess with our minds.
We spend our days trying out new meds,
We sleep off their effects, snug in our beds.

As the storm continues to build and to grow
We find solace in one thing we all know.
That this too shall pass as all storms do
And then we'll wake up to begin life anew.

 
Jigsaw is Ours!!! (Oh, and Appts too)
So today was a huge day for our family.  In June of 2010 we started the application process for a service dog, without any real idea of where we would end up with that idea.  In March of 2011 we got the call that Owen had been partnered with the beautiful Jigsaw. I, Owen, Sammy and Grandma Q had all met her in either training classes or interviews but Daddy still had not.  Leil, Jigsaw's amazing trainer, was kind enough to send us our very first picture of Jigsaw to introduce her to Daddy:

How could you not fall in love with that face?

It has been a long road since then with lots of hours of training - but it has been tremendous fun too. I have never met a dog that loves to play as much as this one, and who loves to work as well.

This long road has led us to today, when we passed our final tests and were finally awarded our ownership papers!  Jigsaw is now legally ours and we couldn't be more thrilled.  Sammy knew that we were testing today and when we pulled in the driveway she ran outside to find out if we had passed. I knew that we would - Jigsaw really knows her stuff and I knew she wouldn't let us down. She has been a family member since she moved in in March, but it is great to have it official.

From helping Owen to sleep off his seizures:

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To warning us of his seizures and helping him through EEG hookups:

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She has been a wonder in how much comfort she has brought to Owen. 

But she has also been a great source of joy in just playing too:

And looking beautiful whatever the setting:

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Or just being a warm furry friend:

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We couldn't be happier that she is now officially, ours forever!  And of course, there must be HUGE thanks to the entire team at Saint Francis Service Dogs for their help and generosity!!!

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As much as I'd love to leave it there with Jigsaw, I have to do some medical stuff too while I'm in here as there are some things that need updating in that area. 

On Wednesday we went back down to Duke for a series of checkups.  Owen had his first seizure in three and a half months on Monday. Boo!! But it was good timing anyway as we were headed to the neurologist in two days anyway...much better than if it was two days after seeing the neurologist.  Owen has gained a whopping four and a half pounds since we last increased his meds, so we thought that perhaps he needed an increase in his Depakote dosage. They checked his levels while we were there and sure enough they had dropped off, so we have increased his dose in hopes that it was just a breakthrough seizure because of his weight.  They also fiddled with his VNS a bit more to increase the frequency of the pulses to see if that might help.

I also asked about his EEG results.  Those of you on Facebook will know that I was driving myself straight up a tree with looking at the scribbles and waves on his EEG while we waited (rather impatiently) for the neurology team to give us official results.  I saw things like this from a known seizure in 2010 where we watched him have a full clinical seizure in front of our eyes:

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and I was comparing it to things that I randomly found in our readings in November that looked like this:

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and wondering why that wasn't a seizure as well. So I asked Dr. Gallentine to explain it to me, and he did. He said that the big ugly dark lines actually had nothing to do with seizure activity, even when it looks like this:

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those are all just muscle movement.  Even an eye blink can cause squiggles.  No, he said that the real seizure stuff is slow and rythmic. So if you look at the known seizure one again:

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it's the highlighted stuff below in thick red lines (the thin ones are the EKG lines, I should have chosen blue or something to contrast I suppose) that are the actual seizure activity:

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And there is clearly nothing like that one the scary looking ones from this year.  And now I know what to look for in future when I spend hours scouring EEG results :-)

And finally we met with neurosurgery.  Owen has never had very good balance but it seems to have gone downhill ever further in recent months. We have also noticed that he has started choking more and more on thin liquids.  Balance problems and choking are a sign of a possible worsening of his Chiari and we'll be getting a thin slice 3D CT scan in early February to take a peek in there to see if anything has changed. These symptoms could also be a sign that he needs to stop chugging his drinks so fast and the seizure meds are messing with his coordination more than we thought. I don't know whether to hope that the Chiari is worse so that there is hope that his walking will improve, or hope that it has not because it is major surgery to get that improvement.

But otherwise Owen has been the happiest he has been in ages.  He is babbling again and he is into absolutely everything, which is as it should be.  We just have to remember to keep the toilet lid closed again.  He may not able to walk, but he is an expert crawler and climber.

"Look, I'm tall enough to see over the counter...I wonder if there is anything up there?"

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"Hmmm, nope.  But wait?  What did Daddy just put up there?"

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"Ah, yummy success!!!"

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And then there is Owen's Christmas present.  I thought the relatives might enjoy seeing what I did with the Christmas money that they sent.  The makeover that I did in Owen's room for his birthday has been a wild success.  He stands up at the handrails almost every day and plays with his toys.  This is excellent, but it requires him (and therefore me) to be upstairs for a large portion of the day to get in really good standing time.  I thought it would be a good idea to give him an area on the main floor where he could get upright as well. As soon as we cleared out the Christmas tree I did this to that corner:

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I'm not sure what we will do with the Christmas tree next year, but that problem is 12 months away and for now Owen is enjoying his new play area.  I'll close with Owen catching Mommy in the mirror and giving me a big ole grin:

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Merry Christmas

I thought that this Christmas deserved a special season's greetings message from us.  If you follow the archive links to the right, you will see that last year at this time Owen was Seizing Thru the Season.  It was one step forward and four steps back.  I believe I described it as "The Long Dark Tea Time of the Soul" (quote stolen from author Douglas Adams)  Not fun.

This year was shaping up to be the same way - from September until mid December he was unable to stay awake more than a few hours a day.  We couldn't figure out why.  We had pneumonia, poo issues and vague symptoms.  EEG after EEG, CT scans, x-rays, the works. 

But then things turned around.  We got the poo cleaned out and that solved the pain issues.  And then we got the big answer.  He wasn't sleeping due to shunt problems or seizures, it was mono.  The simple, obvious, and we never thought about it because 5 year olds don't usually get mono, but this 5 year old spends a lot of time in germ infested hospitals and doctor's offices.  But eventually I started showing the same symptoms that Owen was.  I was exhausted for no reason.  I went to the doctor and the blood test confirmed it - I had mono.  We had the same test done on Owen, but it is inconclusive in young children because they don't produce the same antibodies.  But with me testing positive and him starting to perk up in just the right timeline for mono to be overwith, it's a pretty certain thing. 

And so now Owen is slowly coming back to normal.  He is staying awake all day and he is moving around more and more.  It is taking time for his strength to build back up, but he is getting there quickly.

But wait, there's more!!!  It has been 2 months and 22 days since his last seizure.  This is an unprecedented break for us.  Between the VNS, the new meds and Jigsaw's help, Owen has finally managed to get enough of a breathing space to be able to thrive again.  This alone would be an unbelievable Christmas present!

These pictures are from Owen today:

Owen taking a cookie out of a bag all by himself.  It may seem simple to you, but this is a complicated task requiring him to hold on to the bag with one hand and to reach in with the other to grab something he can't see.  It was a task that he finally learned how to do a few months ago, but then stopped doing again while he was ill.  At 5 years old he has finally truly mastered this basic task.  He spent his morning happily pulling animal cracker cookies out of a bag.  Hey, it's Christmas, he can have cookies if he wants to!

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And Owen just loves to push buttons.  He can't play the games or follow the instructions that the toy is giving him, but he knows that if he pushes buttons things make sounds or flash lights and he likes that:

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His friend Mya sent him some jingle bells that he had a wonderful time with:

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Recently Ms. Pat, Owen's special ed teacher, started trying him out with an iPad.   I have downloaded the same apps onto my iPhone to help him start to learn the basics.  The best one is a virtual xylophone where you just have to touch the screen and it will play tones.  Owen isn't up to touching specific spots to make specific things happen yet, we are just trying to teach him to touch the screen to cause something to occur.  He is learning and he likes the xylophone sounds.  Grandma and Grandpa recently got an iPad and here he is with Grandpa trying out the xylophone (Music Sparkles is the app name):

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So this Christmas we are counting our Blessings.  Having two healthy kids who are home for the holidays and doing well makes this an awesome Christmas!

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Merry Christmas to all, and to all a Good Night!

 
Thanksgiving Tradition

So once again we have made it home the day before Thanksgiving - another narrow miss on a major holiday but I'm not greedy, I'll take it! 

If you are busy with Thanksgiving and just want the overview, here are the bullet points:

  • EEG showed no seizure activity (WOW!)
  • Poo backed up again - think it might be slowing down the shunt causing our sleepiness
  • Admitted to hospital for clean out, hopeful the sleepiness will go away now
  • Home yesterday afternoon, now belly pain free and waiting to see if he will stay awake during the day
  • There is a cute picture at the bottom
If you want the long winded explanation with humorous bits and detailed explanations read on:

So when last I posted we were starting our second EEG to check out the long stretches of Owen not being able to stay concious for more than a few hours.  It turned out to be the worst week ever to have an EEG because for a change Owen did very little that we were worried about.  He had had a sinus infection starting the in the middle of the previous week and we had put him on antibiotics for it and rather miraculously we had a solid 7 days with no Ativan and no unexplained 5 hour naps an hour after waking.  We thought we had the answer, maybe he had been fighting a little infection (that didn't show up on the blood tests that we had done in the first week of the sleepy issues) all this time.  I emailed his neurosurgeon telling him that maybe we had found the answer.  Dumb@$$.  I should have remembered that Owen has a pyschic link to Dr. Grant's email account and within an hour of sending the message Owen fell asleep on the couch.  Luckily this was the last day of the EEG so if the sleep was seizure related we should have it on the recording. 

Meanwhile (because there is always more than one thing going on with Owen) we had begun to have poo issues again.  When we last increased his Depakote we immediately began to see a decrease in the daily output.  Right from the beginning we began evasive manuevers and increased his Miralax and number of enemas.  Apparently it wasn't enough.  By the beginning of last week it was obvious that we had lost the battles and were close to losing the war as well so we shifted into high gear with two enemas a day, magnesium citrate and senna added into the arsenal.  On Monday though we realized it was time to run up the white flag and we headed in for an x-ray of the belly.  Sure enough, he had two areas of "very dense matter" as the GI put it.  We were admitted for a clean out. 

So on Monday afternoon we were in the hospital changing diapers every half an hour or less, waiting for the results on the EEG, and three days into another sleepy cycle.  We had a lot of hopes riding on the clean out.  You see we had finally gotten the results of the EEG and if you can believe it, they saw NO seizure activity.  Now that is a small miracle in and of itself because we aren't used to hearing that with Owen, but it also left us with no explanation for the sleepy cycles.  We had one last hope - the tubing for Owen's shunt ends in a big coil in his abdomen.  When you get a backup of poo the intestines expand to accomodate the situation and they can actually expand quite a lot.  This expansion can push the intestine up against the tubing causing a kink which can slow down the flow of CSF, mimicking a shunt failure.  As the mass moves through the intestine the shunt will intermittently kink and unkink so the symptoms will appear and disappear seemingly at random - which is exactly what we are seeing. 

The clean out was successful and at the very least Owen is no longer in constant pain from his belly.  It is going to take a while to tell if the sleepy cycles are over.  He has slept a lot in the last two days, but he just got home from the hospital yesterday afternoon and he has a nasty cold so we need a few days of normalcy to tell if we are in the clear or not. 

So for this Thanksgiving we are thankful that we are all home, that Owen is not in any pain and that my parents are now only 15 minutes away to visit for Thanksgiving rather than 12 hours!

I'll leave you with this recent picture of Owen:

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Meetings and Teletubbies
Yesterday we headed down to Duke to begin a 5 day ambulatory EEG.  Before we spent a few hours hooking up wires we were lucky enough to be able to meet up with the Gareau family.  The beautiful Meagan was at Duke for an infusion today and we were able to say Hi before our appointment.  Below is Meagan and her Mommy Molly with me and Owen:

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And I got in some quality snuggles with Meagan (picture stolen shamelessly from Molly's Facebook post:

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I always feel so blessed when a family allows me to share in the miracle of their little one's very special being!

After our appointment we headed over to the Neurodiagnostics Clinic to get Owen hooked up for his 5 day ambulatory EEG.  The ambulatory bit means that we can take him home and don't have to stay in the hospital.  Of course we won't be spending much time at home in those five days because you have to go back every 48 hours to have the data downloaded from the card - and it's a 7 hour round trip for us so three of the 5 days will be spent on the road.  We thought about getting a hotel for a few nights, but Owen in a hotel is a lot of work and would be very disruptive to Owen, and at least we'll get two days with a normal routine to watch. 

What are we looking for?  We have had several times in the last few weeks when he has acted like he's had a bad seizure, and yet we saw nothing - we are hoping for such an episode this week so we can see if that is what has happened.  We have also been seeing quite a few things that may or may not be absence seizures.  This type of seizure is difficult to determine definitively without an EEG because they are over so quickly that it is hard to say for sure whether or not it is happening. 

Halloween seems to be our holiday that gets trampled on by hydrocephalus.  Here is Owen with his sister at Duke last year on Halloween:

Do you see any resemblance to this year on Halloween?

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I never did get him into his costume this year, it was a very busy day, but he is sporting the same Teletubbie hat!

Here he is sitting on his bed at home, you can see his backpack:

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No, he doesn't have any pants on.  Daddy was starting to put him in his PJ's when I got out the camera.  Why did I get out the camera?  Because he was being so darn cute.  This is one of Owen's greatest talents - he can tickle his own feet:

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We will return to Duke tomorrow and again on Friday.  We're hoping to spend as little time as possible there so that he can spend as much time at home as we can collecting data in a normal environment so we're going to make these very short stops we hope!!!  Now if only they would stop closing large portions of route 86 in NC down to one lane for repaving I'd be even happier!!
 
So, What's Up?
I thought I'd use my hours sitting in the hospital (for a little procedure for me, not Owen) to do an update of how the boy is doing these days. 

Socializing
Firstly we had another meet up at Duke while a couple of adorable girls were getting their infusions.  I was thrilled to be able to hold Miss Claire again, it had been a few months and I really missed her Mommy and Daddy (Amy and Brad) as well since I had spent so much time with them when Owen was in for seizures earlier this year while they were waiting for Claire to be born and then spending time with her in the NICU at Duke.  I can't believe how big Claire has gotten! 

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And how could you not love that smile?

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Owen looks pretty much like he felt at that point - tired from a long day, but it was great to finally have the two of them meet.  Owen was never allowed in the NICU with me, or the step down unit so he had never gotten a chance to meet Claire in person. 

Claire was also kind enough to share her toys with Owen:

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She even shared her most very favorite toy: Mort.  I wonder if she would have been so generous if she had been awake :-)

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And I couldn't visit Claire without getting in some serious snuggling:

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We were also thrilled to meet a new family whose little one was getting an infusion this day as well.  Introducing Kahlyn Soto along with Owen and Claire:

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Owen was enjoying hanging out with two such beautiful girls I think:

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Gosh, he looks like Gulliver in those pictures! 

Jigsaw had had a long day by this point too and she had just made herself comfortable and slept while we visited:

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Of course the instant she hears the bleep from the camera focusing she opens her eyes, but you get the idea. 


Sure Steps
In my last update about Owen I said that we were going to try out some SMO's from Sure Step to help out his balance to see if we could get him walking a bit better.  They finally came in.  As I will talk about in the next section it's a little hard to know how much they are helping due to seizure stuff, but they certain seem to make him more stable.  Here you can see them on his feet while he's climbing the stairs:

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Owen peeking back at his Mommy to see if I'm still there:

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He is supposed to be wearing shoes with them, but he is very good at taking the shoes off.  Speaking of shoes, Blake Cotten was wonderful enough to give Owen his old shoes that fit his AFO's, which work much better than the standard Walmart ones that we had.  Blake is the little boy in the middle with the helmet in this picture that I posted a few months ago:


Eventually we did get him to keep the shoes on long enough for a picture:

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Owen has certainly picked up speed in walking around on his railings since getting the Sure Steps.  I also have a little video of Owen showing off one of his more impressive skills.  He actually learned how to do this last year, and then lost the ability for quite a while due to the seizures, and then started doing it again after getting his VNS.  I have just finally gotten around to video taping it.  This is Owen climbing the ladder into his sister's bed.  For some reason he is absolutely fascinated with this and will crawl from the living room, up the stairs and into her bedroom to climb the ladder several times a day. 




Seizures
Well it's the fall and for Owen that has always meant that he enters the most seizure rich season of the year.  The VNS certainly improved his situation - we are only having big ones every few months instead of once a week, and even the big ones aren't as severe as they were before the VNS.  We are not, however, seizure free. 

When last we discussed seizures he was having small ones every few days and they had increased his Depakote and given us Ativan to stop the seizure before it hit if he was starting to act strangely.  As soon as he started taking Depakote during the daytime, we lost most of the progress that we had made with the walker.  If you remember I posted a video back in August with him making an epic walk at the mall, and he had been doing that regularly.  Once we started the daytime Depakote he stopped the long walks and would only do a few steps at a time.  We decided to continue giving it a go though to see if it would stop the seizures. 

On Owen's birthday (September 25th) we decided to take him out on a boat for the first time - we used to spend lots of time sailing and diving and it was time to get back on to the water.  He spent most of the day just completely out of it.  We did give him Ativan, and he was awake, but he was moving very slowly.  The day after that he slept almost the entire day. The next day he was awake for most of the day, but he couldn't pull to stand and even his sitting was very wobbly - since he had no obvious illness or seizure it was time to check the shunt.  We got him in for a CT scan and it showed that the shunt was fine and he eventually got less wobbly and was able to stand back up.  The assumption was that he had had a huge seizure that no one saw.  Or perhaps that whole day on the lake was a seizure, just with no convulsions or vomiting.  A few days later he had the biggest seizure he had had in months and actually needed Diastat. 

So we increased his daytime Depakote again.  Now before the big seizure that we didn't see we thought that perhaps we had started to see some absence seizures.  This type of seizure is hard to be sure about because they are quick, they last less than a minute and by the time you can get to him to poke at him it's usually over with.  After the last increase in the daytime Depakote though they seemed a bit more obvious.  We also had a morning, 4 days into the last Depakote increase, where he had lots of tremors in his hands.  Tremors are a common side effect of Depakote and so I called the neurologist to be sure that we didn't need to do something about it.  He said just to wait and see and it wouldn't be permanent even if the Depakote was causing it.  By the next day the tremors were completely gone- which means it wasn't the Depakote.  He had had yet another seizure without enough outward symptoms for anyone to catch it.  This was scary, very scary.  He is monitored by someone 24 hours a day.  I sleep with a video monitor next to me and the dog sleeps with him.  He is never alone.  So how can I fight what I can't see?  How can I treat the seizure if I don't know he's having one? So it was back into the car to see the neurologist at Duke again.

Dr. Gallentine agreed that something is not right.  We are still giving him Ativan every four days or so, and if we don't he seizes so it's obvious that we are treating the seizures with the Ativan more than we are the Depakote.  And we are having lots of side effects from the Depakote which is undesireable.  He ordered a boatload of bloodwork and an ambulatory EEG.  So once we have the levels back and some more data we will decide about maybe backing off the Depakote and just using the Ativan every few days.  The ambulatory EEG will start on Halloween and last for 5 days.  The bummer is that you have to bring it in every 48 hours to download the data.  That's a 7 hour round trip so we will only be home for 2 out of the 5 days.  Hopefully though it will let us know where we are because things have become so vague.


The Good News 
The good news is that while we have lost some ground with the walking and the seizure frequency, we have seen some progress in other areas.  I need to get a video of him in OT soon.  His OT has these plastic oreo cookies that come apart and their filling has different shapes in them for you to match and put back together.  The filling is not very thick and getting them apart requires some real fine motor skills and yet the first day that she handed them to him he got one after the other apart.  And Owen has never been willing to put something in to a container.  He can take it out, but he wouldn't ever put it back in.  He is now doing it all on his own without even any cueing.  He has started to say Hi again, so we have Mama and Hi.  He has begun to sign more frequently as well and is using "want" on a routine basis in addition to the usual "more".  He is also using the separate sign for "eat" rather than just using more for eat.  So we are slowly regaining some of the ground that we lost in the seizures last year. 

And I will close with a picture of our birthday boy out on the water for his first time - 5 years old, wow!

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Let's Try That Again, In Reverse
So, I'll be ending this blog entry with some really incredible walker action by our little man and then the title will make all kinds of sense.  Before that though we have some medical things to take care of.

When last we chatted about Owen's seizures I described the fact that we were trying out the use of Ativan for short periods when he most seemed like he was going to seize (usually it's when he can't sleep).  Well it turned out that we were having too many seizures while we were in the 7 day waiting period between doses.  It had become clear that it was time for a new plan. 

So last Friday we headed down to Duke to see what Dr. Gallentine had to say.  First he increased the current on the VNS, and then he changed the waveform.  Instead of the current turning on for 250 milliseconds, it now turns on for 500 milliseconds.  So we are hopeful that this will help.  Finally we decided that it was time for some daytime seizure meds.  He had been taking Depakote at night to help him sleep, but none during the day.  In order to introduce it slowly we took the dose that he was getting at night and split it in two, half given in the morning and half at night.  We also switched to the liquid form because it's easier to split a liquid than it is to separate out several hundred little sprinkles inside a capsule that dance everywhere as you try to get them on the food.  If the Depakote doesn't work, then we will try a few months of Tranzene.  The problem with Tranzene is that much like Ativan you will eventually build up a tolerance to it and that tolerance can also effect the ability of the rescue meds to work - but the idea is that we are just buying time until we can work the VNS up to its optimal settings.

The daytime liquid dose began the same game we've always played with seizure meds.  A zombie in the morning when it hits him, then he processes it too fast and he becomes uncontrollably zippy by the afternoon.  As a side bonus though, he started sleeping through the night, which has been a pipe dream forever.  So today we have tweaked the plan a bit.  We are trying the sprinkle form during the day to try and level out the effects, but keeping the liquid at night because we REALLY like sleep.  

The good news is that we haven't seen any seizures in the last few days.  We have also seen some progress in the last few days in his speech, he's making sounds that he hasn't made in a long time.  He crawled up the stairs yesterday, which he hasn't done since last fall.  I think he's been capable but he hasn't shown any interest.  He's also back to roaming the whole house and getting into things again.  He had started to roam some in the last few weeks, but it's non stop now which is a mixed blessing :-)

Walking Progress
Last Wednesday we had a stellar walking day at the mall.  Firstly he wasn't on any meds or seizing, which always increases his performance, hopefully being on the Depakote won't change that.  We also had bought him some new shoes with higher tops to increase his ankle support.  His feet are still tiny (though growing fast) and they don't provide much of a base of support for walking and his ankles are tiny too so they need a bit of help.  We may need AFO's at some point in the future, but right now his PT is afraid that they will actually prevent him from building the strength that he needs.  I do think the hiking boot configuration has helped.  Finally, we decided to try turning the whole rig around.  Owen has always preferred to push something in front of him rather than pulling it behind him, but it is nearly impossible to find a pediatric walker that is designed to be pushed rather than pulled.  So on a whim we tried turning around his existing one.  In the video below it was before we had a chance to increase the friction on the wheels, so Ms. Nacol is in front of him keeping him from going too fast, but look at those little legs go!  And this is only half of the big walk that he did that day!  At the end he did get tired and a bit cranky, but check out the controlled descent when he decides that he's done.



This progress is also a testament to how much the VNS has helped.  Even though we have been fighting seizures, they aren't causing the same damage that they were before and we aren't facing one to two weeks of recovery after each one.  The issue now is that the frequency is so high that we're dealing with it too many days out of the week so if we can just get that down with the meds there's no telling what he will do!
 
Update on Owen

So it's time to update Owen's info and how he's doing medically.  If you have been following the family blog at all then you know that he is making big strides in several areas.  I'll repost the highlights at the end of this entry for those who haven't seen them because I like to always end on a happy note.  Firstly though, we'll delve into the depths of Owen's seizures and our decision on school in the fall.

School
I guess I'll start with school.  Last year we tried Owen out in preschool.  In the fall, before the virus season got underway I think it was a good experience for him to be around all of the other kids.  He learned some new words and he gained some skills.  This was great.  And then the viruses started and with them the seizures resumed in earnest.  He eventually lost all of the nifty skills that he had picked up because when Owen seizes he regresses.  By the time we got to spring we were going day by day - will we take him in or won't we?  Every morning we had to ask this question. It was exhausting.  I really began to dread the whole thing.  He was never able to make it through a whole week because as soon as I'd bring him in we'd only get a few days before he would start the cycle of seizing all over again.  In late May I finally called it and said we'd just try again in the fall.

Well we have finally decided that we will not in fact be trying again in the fall.  I will be sad not to be returning because I enjoyed getting out and seeing actual people during the day too, but it is not meant to be at this time.  Owen has made a lot of progress this summer and we don't want to lose it.  We still don't have his seizures anywhere near under control and we can't ask his little body to keep up the pace that he did last year.  And the truth is that Owen is not ready intellectually to learn anything at all that they will be teaching in Kindergarten, and in our county it is inclusion-only so there is no chance of a special needs classroom.  He also missed most of his school based therapies and special instruction last year because they were tied to him showing up for school and he missed more than half of the year.  If we declare him home-based then he will receive those services whether or not he is well enough to make it into school, and without being exposed to all the germs. It has been a difficult decision because it feels like we're moving backwards, but I feel that it will be the best for him in the end.  And he won't be all alone - we will have play dates with Mya and we'll go on lots of outings where he won't have to touch lots of toys that other kids have just put in their mouths.  And maybe, just maybe we'll make it through to June with all of the skills that we started out the year with this time.


Seizures
So the seizure front is still a struggle.  The VNS has made a difference in his overall awareness level, and it still continues to make the recovery time much quicker than it was and his mood is still better than it was before.  However the honeymoon that we experienced just after the surgery has been slowly fading in terms of seizure frequency and severity.  I was inspired by my friend Melanie who posted cool graphs on her blog (sorry, her blog is private I believe so I won't post a link).  It really made it easy to see just how we are doing with the seizures, which is a really subjective thing from day to day.  The seizures don't feel as bad because he isn't a wreck for a week afterward, but the results on the graphs were kind of startling to me.  I broke them down into two categories: big and little. My criteria was that if the seizure resolved on its own, with no need for Diastat or oxygen then it was a little one. If I had to intervene with meds or O2, then it went into the big category.  I should probably have also added a catastrophic category to break out the really horrifying ones, but I didn't. So this is what we ended up with:

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Owen's VNS surgery was in 1/2011.  We weaned the Keppra throughout 5/2011. The really big spike in total seizures was when he was totally off meds and no VNS last year (that was all kinds of fun!)  What becomes rather clear is that particularly since we weaned the Keppra, we are getting quite a few little ones through.  In fact what we often see is a small cluster - two little ones followed by a big one and then a break. 

We really don't want to put him back on full time meds because he reacts so poorly to them.  He cannot go back on Keppra - it made his already touchy GI tract an absolute nightmare and he was completely miserable and in pain most of the time.  We have, for now, tried an interim solution.  Owen's neurological status tends to cycle.  We will get a week of good sleep and then suddenly he won't sleep for more than a few hours.  Once this starts he will start getting more and more manic and zippy and eventually within a few days we will all be exhausted and he will seize. And then the cycle starts all over again.  So, at our last neurology appointment we decided to try giving him Ativan when he starts the cycle of not being able to sleep.  We will give it to him for 48-72 hours and see if that is enough to stop it.  We tried this once for 48 hours and he was fine while he was on the Ativan and for one day afterward, and then he started a cluster.  You can't give Ativan long term and we have to wait at least a week in between rounds of it.  We are currently trying it again.  Last night he couldn't sleep so we started it first thing this morning - which is probably a full 24 hours earlier than we started it last time because we waited for a pattern of two nights. We are also going to try for 72 hours.  I'll let you know how it turns out.

If our Ativan experiment doesn't work out then we'll have to see about adding back in another drug if this trend continues.  Boo.  I discussed this plan with Dr. Gallentine at our last visit and it will probably be Lamictal that we try.  We tried it once before, but it was combined with two other meds and one of them was Trileptal which we suspect was actually making things worse.  We didn't see a whole lot of side effects immediately with the Lamictal, so it seems like a good place to start if we have to get back on that horse again.


On to the Good News
As I said, Owen has made really good progress this summer despite the seizures not being what we had hoped they would be by now.  He has finally started to make some use of his walker now that we have moved to the mall.  He doesn't like to use it at home, it's just too comfortable of an environment where he is used to being able to crawl everywhere.  In the wide open spaces of the mall where he has never crawled though, he is willing to give it a go most days.

 


He has finally learned how to stand on a step stool without going off the side so that we can wash his hands in the sink - he just likes it because he enjoys playing in the water and looking at the lights and mirror:









This has made cleaning up after our painting sessions a whole lot easier!

He is chosing to play in a high-kneel position more and more often, which is building hip strength:




Next up we have Owen doing his work.  Ms. Pat - Owen's Special Educator - made up bags for Owen for each letter of the alphabet that are just awesome.  Each bag has a box with an item that starts with the current letter:

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On this day we had a moon for "M".  He can finally open the box on his own and take out the object!  Then each letter has a book associated with it - this is Owen's favorite part and it is almost always the first thing he pulls out of the bag:

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And then he has a book with a page for each letter.  On each page we glue three pictures of objects that start with that letter, and then we have a stamp pad to stamp the letter onto the page.  The gluing is all hand over hand, but he will occassionally make an attempt to put the stamper on the page if he's in a good mood.  We hadn't started the page for the letter "M" yet when I took these pictures so I showed him looking at the letter "L".  He really loves to look through the book he has made.  No, I don't think he has any idea what the letters actually are or what they mean, but he likes the pictures and maybe he does realize that it is something he made and likes to admire his hard work!

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We have also done a tremendous amount of painting this summer. He still won't actually put the paint brush on the paper under his own power, but he will now let me do it hand over hand with him so he is at least getting the experience of the different wrist motions that are involved. He will occassionally pick up the paint brush and use it to paint his own hands, which is messy but still counts as tool usage I think. 

Finally we have moved Owen to the family table, rather than in a booster seat with a tray attached.  He has finally reached the point where he will leave the plate on the table, rather than just using it to dump all of the food on the floor in one go.  He only uses the fork to bang on the plate and make great, loud noises, but he does seem to be interested in at least touching it again.

So that is where we stand now.  I know that if we could ever get the seizures under control we would start seeing the huge leaps that we have seen in the past when they calm down - so now we just need to get there to keep the ball rolling! 

Today our family and Saint Francis Service Dogs were featured in an article in the Salem Times-Register.  We were thrilled to be able to share our great experiences with Jigsaw with so many people.  You can read the article here.

I will close with this picture from today's walking therapy:

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So Where Are We Now?
Today we went down to Duke to meet with Owen's neurologist.  We were lucky enough to be able to meet up with two other families that were also at Duke today for appointments and I'll get to that fun part at the end of this entry, but I also realize that with all the excitement about Jigsaw that it has been a while since I have done an update about Owen's medical stuff.

Seizures
Owen continues to have some fairly nasty seizures when he gets a virus.  Stomach viruses in particular produce the most spectacular seizures for some reason.  After watching the cycle start all over again when we started having him in school full time again, we decided that it wasn't in Owen's best interests to be in school at this time.  We pulled him out for the last two weeks of school, and we're going to play it by ear as to whether or not he needs to return in the fall. 

So, you may ask, was it worth doing the VNS given that he is still having seizures that are occassionally spectacular and are still not stable enough to take a vacation without having to bail early the way we did in early May?  Yes it was.  We've had two huge seizures in the 5 months since the VNS was implanted.  Our average was every 7 - 9 days before the VNS.  We would go through long periods where we expected a seizure with convulsions and significant oxygen drops every week. Now if he's not in school and not being exposed to viruses we often go two to three weeks without a seizure and they are generally mild. So we're still way better off with the frequency. 

Next would be the meds themselves.  Owen is incredibly sensitive to even small doses of seizure meds and starts experiencing big side effects almost immediately.  The Keppra that he was on starting last Thanksgiving, at a mere 1.5 ml twice a day, caused enough mood problems to need 100mg a day of vitamin B6 to counteract that.  The 100mg of B6 caused nausea so he needed Nexium once a day to counteract that.  And the Keppra constipated him so badly that he was in nearly constant pain from his belly even while taking Miralax at every meal.  He was absolutely miserable on Keppra.  Trileptal made his seizures worse, Depakote made him so sleepy that he couldn't get off the floor, Zonegran zipped him up and ruined his coordination.  At this point we have weaned all of his seizure meds except for a very small, non-therapeutic dose of Depakote at night to help him sleep.  The last time we tried to wean him off the meds it was a disaster, he started seizing almost non-stop and regressed horribly.  He hasn't done any such thing this time.  His background state with no meds is still much more coherent with the VNS than it was on meds before the VNS.

Finally we still continue to see that his recovery time is much faster with the VNS than it was before.

In my discussion with the neurologist today we really talked about the virus thing.  Nothing has ever made any difference with the viruses and the seizures they produce. The VNS has made the recovery time quicker, but hasn't stopped the speech regression.  He did say that there are a lot of kids for whom a virus just means a seizure no matter what they try.  That's the bad news and means that we may not be able to have him in school.  The good news is that many kids outgrow having these seizures all the time as their immune system matures and they aren't catching something every other week. 

And his buddy Jigsaw continues to stay by him during his seizures.  She had been sleeping in this position, but she always opens her eyes when she hears the bleep from my camera that says that it has focused. 

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Intellectual Development
I posted last fall about all the words and signs that he knows.  The problem is that every time he has a big seizure he loses just about all of them because his seizures occur mostly in his temporal lobe, which is where speech is processed.  He has a few basics like "ma ma", "more" and "cookie" and "up" that he seems to keep, but all the rest are just like starting over from scratch each time.  As such we never really get all that far with them. 

He does not know his colors or body parts.  The most complex command he can really handle is "stop that".  He still does not seem to have the idea of objects having a specific purpose - to him a spoon is not a tool to be used to move food into his mouth, it's a shiny object that has a neat shape.  He won't try to make a mark with a pencil or crayon, he doesn't build block towers. 

He does have some really good problem solving skills though.  If he wants something and he has to move something else to get to it, or pull a string to get it, etc he will be able to do it.  He will search for hidden objects, and has a good memory as to where his favorite items are.  Even when we were out of school for three months, the day he returned he unerringly crawled straight to his puzzles which are not visible from the main room and meant he had to go into another room.  He can take the puzzle pieces out and play with them, but he can't put them back in. 

Fine Motor Skills
He can push buttons and knows that they activate lights and sounds and such on his toys.  He can push the keys on his pianos and keyboards and loves to do so.  He does not have any rotary motion though so he cannot turn knobs.  He can turn the page in board books, though not in paper books.  He looks at board books by the hour and has a large collection.  He does not have a reliable pincer grasp and will generally use his whole fist.  He doesn't get the idea of a writing utensil and so doesn't really do more than hold it in a fist grasp with you holding his hand.

Eating
As I said above, he doesn't get the idea of a spoon or fork as having a specific purpose.  He has the coordination for it, and if you work really hard at repeating the motion of putting a spoon into the food and then into his mouth he can repeat it.  If you move the plate though, he will scoop the empty air and put it in his mouth.  He is however, capable of shoveling any type of finger food into his mouth with his hands and he is quite efficient at this.  He will pick up a piece of food, take a bite off and put it down and then repeat the process without shoving the whole thing in his mouth.  He can reach into a bag and pull out items inside while using one hand to hold and stabilize the bag.  He can drink from any cup with a straw independently.  He currently weighs 37 and a half pounds so he is putting on the pounds nicely, just ask my back and my knees and my hands from lifting him :-)

Gross Motor Skills
We have seen huge progress in this area.  He now does a proper crawl with his belly completely off the floor, and can do this at rather high rates of speed. He can get himself into a high kneel position and play with a toy.  He can pull up to stand on almost anything.  He will climb absolutely anything that he can find to climb on.  His favorite place to hang out is on top of our coffee table.  He can cruise anywhere as long as he has something to hold onto.  And, we are finally making progress in his walker!  Check him out in action here:


He is so very close to walking now. We have signed him up for twice a week physical therapy for the summer to try and kick-start his mobility and get him walking soon!

So that's really where we are now in his development.  Since getting rid of the Keppra and the tummy pain that came with it he has stopped having days/weeks at a time where he just whines all day and bites his wrists because of the pain.  He is back to his lovable self that will seek you out with a "ma ma", crawl up to you and put his arms up to be picked up.  Of course he's a busy boy now and he won't stay long before he crawls off again for another adventure, but the smiles are back. 

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And finally we are up to today's visit.  By the sheerest coincidence Owen, Kendal and Blake all had appointments at Duke today.  Owen and Kendal even had appointments with the same guy - Dr. Gallentine the neurologist, and all within an hour of each other.  Such an opportunity could not be missed to finally meet up so we all got there early to have lunch.  It was a bit hectic trying to get five kids (Owen and Kendal brought their sisters along), a dog, three Moms and a Grandma all through lunch and to the appointments, but I'm glad we made the effort.  It's always awesome to meet with other Moms, to get to see the kiddos that you've seen online in action in real life, and for the siblings to get a chance to see other kids whose lives are like theirs.  Blake and Kendal are just adorable and both loved Jigsaw.  I wish I had thought at some point to take a picture of Jigsaw on her first visit to Duke - where she was wonderfully received by hospital personnel, doctors and the kids in the waiting area - but Kendal's Grandma did get an awesome picture of the kids and their Moms by the fountain in the lobby at Duke:

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Jigsaw's First Seizure Experience

Yesterday's training session started out fine, we were practicing a meet and greet at the door.  Jigsaw and I were working in the kitchen with Leil coming in the door when we heard "he's having a seizure" from the living room.  I had just finished crocheting the medicine bag that we were going to teach Jigsaw to retrieve that day, but it hadn't been hung yet and she hadn't yet learned how to find it.  But she still proved that she's a big help anyway. 

During a seizure there are a lot of things to do in a short amount of time.  We have to keep him upright and make sure that he doesn't aspirate as his seizures almost always begins with vomiting. You have to get the magnet swiped as quickly as possible.  After that you have to get out the pulse-ox and the oxygen tank. And during all of this Owen is awake and reaching out to you and you are trying to comfort him.  During this seizure Jigsaw sat next to him and he reached out to her and pet her while we did the work.  She stayed right by him, both during the seizure and while he was sleeping it off:

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While Owen was sleeping - about two hours this time - we taught Jigsaw how to fetch this bag:

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It is a crocheted bag that is attached to the wall with Velcro.  Inside it are a magnet, Diastat and a small pulse-ox.  In short, everything you need if you are alone with Owen during a seizure to get him through the first few minutes.  By the time he needs the oxygen he is done vomiting and the danger of aspiration has passed so that you can go get the oxygen tank. 

Here is Jigsaw getting that bag off the wall.  We are sitting having a normal conversation.  With no preamble or warning I ask her to "get the bag":

She learned that in about five minutes.  Seriously - she is really amazing. 

 
So Much To Tell
I hardly know where to begin - so much has been happening lately and all those things seem like they should be first in this entry.  So I'll go with tradition and do the medical stuff first and work our way through therapists and meeting another hydro family to finally sharing a picture of the wonderful dog that Owen will begin his training with this week.

Owen's progress since his VNS surgery has been nothing short of remarkable. Before the surgery, and before we started removing meds in the fall, our norm was a major seizure about every 7-9 days.  These had gotten increasingly violent - the last seizure before his surgery, while on Keppra, had almost 20 minutes of full body convulsions including both arms, legs, his head and even his eyes.  His oxygen dropped dramatically.  All of his seizures ended with an 8-10 hour postictal period where he was so deeply subconcious that he could not be awakened no matter what you did to him.

We are now averaging 14-18 days between seizures, so that's a 50% reduction.  They are also nowhere near as severe.  We have not had any convulsions since his surgery.  Even if his oxygen has dropped, we are dropping into the low 90's, not the low 70's or less and the breathing problems are not lasting anywhere near as long.  And better yet is the recovery time.  Instead of 8-10 hours of deep subconciousness - which would mess up his sleep schedule for a week - he only sleeps a normal sleep for one to two hours.  He can be roused if you try, still responds to stimuli and woke up after only 45 minutes after his last seizure because we were on a bumpy road.  Once awake he's right back to baseline crawling around and eating.  Previously it had sometimes taken a week to get back to normal because he would be shaky and uncoordinated. 

Now that the seizures have slowed way down he is back to making intellectual progress again.  He has regained all of his words and signs and has picked up a few new ones.  He now says "dog" and "all done" and signs "thank you".   You can now hand him a granola bar and he will take a bite off and put the rest down instead of cramming the whole thing in his mouth.  He has learned how to climb the inclined ladder into his sister's mini loft bed.  He will now hold a bag of fig newtons with one hand to stabilize it, and then reach in to get food out.  Previously he would just keep pushing the bag with one hand and it would keep moving further and further away from him.  He can pull objects out of the "what's inside" box because he seems to actually know that there is something in there. He just seems to be able to figure things out that have baffled him in the past.

But wait, there's more!

And finally on the VNS, there are the smiles.  Owen had started to have some serious behavior problems before his surgery.  He would swing wildly between rage and manic happiness and as time went on the rage was lasting longer and longer.  He would spend entire days (and nights!) whining and crying.  He couldn't sleep.  This is why he missed almost two months of school.  There are almost no pictures of Owen during that time where there is anything like a smile on his face.  Here are my pictures of Owen from the last two and a half months since his VNS:

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That's right - I've got a smiling boy again!!  And that would have made it worth the surgery all on its own.

His improved frame of mind has also made therapy somewhat more useful.  So here is Owen and the people that he works with at school.  I still have a few more to catch on camera, and I need to get a better picture of Ms. Amy but I didn't want to leave her out.  As an added bonus, we have even more smiles!

Ms. Ryan - Preschool Teacher

Ms. Julie - Music Therapy

Ms. Stacey - Hearing Therapy

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Ms. Angel - Occupational Therapy

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Ms. Amy - The Other Preschool Aide

And Ms. Pat - Special Educator, Advocate and the one that make Owen crack up!

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And now we are up to last week's appointments down in North Carolina. They increased the current on his VNS, and he did a stellar job during his audiology appointment.  Here is another big leap since his VNS. We have been trying for two years to get Owen to indicate in some reproducible fashion that he has heard a sound.  This skill is to be used for testing his hearing with his cochlear implant. We generally have to give him a toy, let him focus on it and then see if the sounds in the sound booth cause a change in expression or him to look up from his toy.  Not the most reliable method of testing.  Ms. Stacey now has him pointing to his ear quite often in practice testing during therapy and he did it THREE TIMES during his testing with the audiologist.  This isn't enough for a full test, but it is three times more than he has ever done before and we are hopeful that he will continue to improve.  He never seemed to "get" what we were asking for in the past and now he seems to understand it at last.

We also had the wonderful fun of meeting another hydro family while we were down this time.  We were actually supposed to meet a few new families and meet up with a few old friends too, but due to an incredible set of circumstances we only actually got to snuggle one new baby - and I did get to chat with Claire's Mom (and her Dad too on the phone, so we didn't forget you Brad!).  The other families were greatly missed and I hope that we will be able to see them soon. So may I introduce Owen's newest friend, Marlena:

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She is adorable and it was great to meet her family too.  Marlena was in for her second cord blood infusion and we peeked in just before they got started.  Owen must have liked her because I found her hospital bracelet in his stroller about an hour later - he wanted something to remember her by!

And now for the dog.  I didn't have a picture of Jigsaw to put up with the story in my last post, but his trainer was kind enough to send me one today.  Here is Jigsaw posing beautifully on the Blue Ridge Parkway:

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How could you not love that face?  We will begin our training on Wednesday with this beauty and I can't wait!  I'm sure there will be many blog entries to come about our training.

Finally I'll close with an awesome picture that Daddy got of me and the kids at the St. Patrick's Day festival this past week:

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Good News and More Good News...

The first good news is that Owen had a seizure on Superbowl Sunday.  Well, it's not good news that he had a seizure, but it is good news that the magnet was able to stop it.  No convulsions, no breathing problems.  He just threw up and then went to sleep for two hours (we are used to an 8 hour or more postictal deeply unconcious state after a seizure) and then woke up and had dinner.  A big improvement.  Yesterday we went to Duke and they increased his current. Since his background current will now be as high as the current that stopped the seizure that day, we are hopeful that we are getting into the range where it might start preventing seizures from happening.

And in even more good news we are really seeing some rapid progress in Owen's cognitive abilities.  Owen had a fair amount of background abnormal brain activity even when he was on meds in the past.  One has to wonder if the VNS hasn't calmed some of that down.  The other day I mistakenly set a whole granola bar (one of the soft ones) down too close to Owen.  I generally have to break it into pieces or he tries to shove the whole thing into his mouth, and generally succeeds.  He grabbed it, took a bite and set down the rest of the bar.  I just sat and stared at him.  We had tried forever to get him to do this without success and here he is just doing it like it was natural.  And then last week I put him down on the floor in the classroom and he crawled over to the shelves where the tubs of toys are kept.  He sat down in front of the shelf, reached up and used one hand to stabilize the tub and the other to pull it out. So instead of the whole thing dumping on the floor as soon as it cleared the front edge of the shelf, he carefully put it on the floor.  We spent months and months in OT trying to get him to stabilize with one hand and manipulate with the other with no success and yet he did it all on his own and has repeated this feat almost every day we've been in school since. 

And finally, the big kahuna:  I brought Owen's Crocodile walker into school this week so that he could start using it a lot more.  I have 5 hours a day dedicated to just working with Owen when we are at school, but at home there are 100 other distractions so I thought I'd have more success there.  I brought it in on Monday and we were gone on Wednesday and look at where we are already:





If the mat hadn't been in the way, who knows how far he would have made it. Considering I brought it in on Monday, he was too sick to use it on Tuesday and Wednesday he spent at Duke, that's not bad for two days effort at school! 

 
One Step Closer...
Firstly, on the VNS front, Owen did have a seizure last Saturday.  We didn't expect that the VNS was turned up high enough to be able to stop seizures at this point.  We did manage to avoid convulsions this time, though it was weird because he threw up, we swiped the magnet a whole bunch of times and then he went to sleep.  We thought it was all over, but he woke up 45 minutes later all spaced out and then he would suddenly snap out of it, reach for his toys laughing and then suddenly go back out of it again.  And then he finally started having trouble breathing and we gave him the Diastat.  Definitely wierd.  He woke up the next morning just fine though so at least he wasn't shaky for days.  We go back tomorrow to increase the current again.

In more fun news Owen got a shiney new Crocodile walker just before Christmas.  He wasn't able to use it for a couple of weeks because of the surgery, but we have once again started putting him in it and he is quickly getting the idea of what this thing is for.

These two pictures were taken either the evening that he got the walker.  Daddy is holding his hands to get him to take a step:

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And he is standing up to play his drum:

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Those pictures were taken on New Year's Eve. We had to take a few weeks off for the surgery, and then we tried him again a few times.  Here he is on the 24th of January engaging in his favorite pastime - emptying out the utensil drawer in the kitchen:

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He is certainly standing more freely than he's ever done before!  And then here is today trying some outdoor locomotion:

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And finally, a little video of Owen getting much closer to moving it about on his own:



Not too shabby for his first time on gravel!
 
Post-Op and Snuggles!
So today was Owen's post-op checkup for his VNS.  All went well. We saw neurosurgery first and Dr. Grant said the incisions look good and Owen is cleared for school again. Then neurology came in and Dr. Gallentine checked the implant by putting a wand over his chest.  He said that the leads checked out fine and that it seems to be working properly.  He then reprogrammed it to increase the current a bit more.  We'll go back on the 31st to increase the current again.  He will increase it twice more (if I've done my math right on the milliamps) and then we'll waita while to see where the seizures are at.  On the Keppra and out of school and therefore away from the viruses that are his worst triggers, Owen was having one seizure a month. It was a big, nasty seizure, but not all that frequent. Therefore it will be hard to know for a few months if it is helping the seizures and so we'll level out for a while to see what happens.  If he keeps having them then they will increase the current again.  If the seizures level out then we will try weaning the Keppra.

So all seems well in VNS land and if all goes well at Owen's GI appointment tomorrow - we're still having lots of reflux as a side effect of some of his meds - then Owen will return to school on Thursday. He hasn't been in school for more than a few hours here and there since October.  Owen continues to sleep through the night - which has Mommy and Daddy dancing in the streets!

Owen and I actually went down last night because the weather was supposed to be bad this morning. I can remember when we used to stay in hotels and I could lay him down on the bed and take a shower and he'd still be there when I got back.  Now I don't dare to go to the bathroom without some real forethought. I turned my back for a moment last night to unpack things and turned back to see Owen sitting up in the chair looking quite pleased with himself:

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Or maybe he was just laughing because he was tickling his own foot - another little talent he has developed.

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I took the pictures with my iPod so they aren't the best, but you get the idea.

I also used to sit in the waiting rooms and crochet and read while Owen hung out in the stroller and napped. Not so anymore, now he's a boy on the move:

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He was cruising from one bit of furniture to the other and I had to wait for him to sit still for a minute to get a picture!  Certainly a lot less boring these days!

Today little Claire (from a few entries ago) was getting her stem cell infusion. This is always an exciting occassion and we got to see Dr. Kurtzberg again when she was done with Claire, which is always nice.

The last time I saw Claire was 12 days ago before she had been shunted.  I could only see her for a few minutes before they shooed me out so that they could do an MRI. Here is the picture from that day: 

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It was great to meet her, but I didn't get to hold her because she was a busy little girl that day.  Today I got in some serious snuggle time:

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And this time she was awake and alert the whole time I was holding her. She spent most of the time just gazing at me and I even got a few smiles!  (Yes, you can tell me that's just gas at this age, but I'm still gonna believe they were smiles!)

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After these pictures Owen and I went off to our appointments, but then I just had to sneak in one more snuggle before I left. 

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And finally I caught a cute picture of Claire giving us a big yawn!

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It was a wonderful visit.  I can't thank Amy and Brad enough for letting me share in the joy of their little girl.  And I thank Brad too for giving up some of his precious time with his little girl to watch Owen so that I could see Claire.  I have met so many wonderful families through this site and I cherish each and every one.

And so now we have the first family photo of Amy, Brad and Claire:

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I wish you well and I hope we see you again soon!

And finally another bit of great news that I just read a moment ago... Matthew is going home today and is doing well.  Really, what a great day!
 
One Week Since the VNS Surgery
It has been one week now since Owen's VNS surgery and what a week it has been!  I have hesitated to blog because you don't want to believe it's true.  You want to wait one more day just to be sure that it really is going to last.  But it has been a week now and it's time to spill the beans.

Owen has slept through every night of the last week.  Is it the VNS?  Is it the Depakote that we added the night before he got the VNS?  Is it a combination of both?  Who cares, OWEN SLEPT THROUGH EVERY NIGHT FOR THE LAST WEEK!  And that my friends, is priceless. 

And his mood. Oh his mood.  Owen has been happy without being manic, and angry without losing his mind.  I do believe he has been enjoying himself. 

We learned a few things by accident during this week too.  His throat was really sore from the breathing tube and he wouldn't eat anything solid for two days - thankfully his main seizure med, Keppra, is a liquid.  He would not take his Clonidine (for mood leveling) in the morning.  Without the Clonidine he did not take a nap in the morning at 9:30 am, which was making school impossible.  When he did finally take the Clonidine two days later, he took a nap again in the morning.  We stopped giving him Clonidine in the morning. He did not lose his mind like he had in the past.  We did learn that he needs his B6 though -which is given to help with Keppra rage. Owen is still not a happy camper when he doesn't have his B6.  The B6 really upsets his tummy so we are trying different times and different dosing to help, but he is definitely in a bad mood without his B6.

Whether it is the VNS or finally getting some sleep that has Owen in such a good mood is hard to know.  I do know that for 7 days now we have not had a manic swing.  The manic (way toooo happy with constant tics and insomnia) swings were always the worst for sleeping and he would have one every few days.  I can't remember the last time he made it 7 days without a swing into severely Happyland.

But wait, there's more!! 

Before the VNS surgery Owen had lost all of his verbal words, most of his signs and had not pulled up to stand for months.  He had regressed almost to infancy.  In the last week I have heard "mama", "dada", "light", "up", "more" and "eat" verbally.  I kid you not.  The signs have come back as well, though we aren't yet back up to the three word sentences that we used to have.  And look at where Owen spent most of his time today:

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Last night he pulled up to stand for the first time in so long it was almost as exciting as the very first time he did it.  And today he climbed up onto the couch - and everything else he could figure out how to climb on!

We've been seeing a lot more smiles out of Owen this week:

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And what is he smiling at?  See here what he was doing:



Yes friends, it has been a good week.  Next Tuesday we go down to have his incisions checked and to have his current turned up.  Whether or not this will last is anybody's guess, but I will say this - the VNS certainly hasn't done anything negative this week and I'll be thankful for where we are now which is so Blessedly better than it was a week and a half ago!
 
Cleared for Launch
Owen is doing well this morning and his neurosurgeon has cleared him to leave as soon as he is done getting his last dose of antibiotics - which should be finished infusing around 10:30am.  There will be the usual fussing about waiting for discharge, but we are hopeful that we'll be out before lunch. 
 
Surgery a Success and Welcome Claire!

Owen came through his surgery just fine.  Dr. Grant said that all went well and he was happy with the placement of the VNS.  The device is turned on with a very low current.  We will come back every two weeks for the next two months to increase the current slowly.

He is very shaky, but he has been sitting up and drinking and is looking more and more alert:

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And here is a picture of where they did the incisions:

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He's not quite his perky little self yet, but he doesn't seem to be in any real pain and is resting comfortably.

And in other great news, Claire was born today!  Yesterday this was Claire still in her Mommy's tummy:

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And now just down the hall from us is a brand new beautiful girl:

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I can't wait to meet her! 

So all in all, a really good day!

 
Surgery started

The actual surgery started at 11:35 am.  Should hear something more in an hour to an hour and a half....

 
Owen is Out
I snuggled him while they put the mask on.  He's out now and they are prepping him.  I'm going to go get some lunch.  I'll post when they actually start the surgery.
 
Meeting the Gibbs and VNS at Last!
It has been a suspense filled lead up to the surgery - again.  The day before yesterday I found that the insurance company had denied the approval for the VNS surgery.  They felt that we should try the resective surgery first.  Since that surgery requires removing the focal point for the seizures from the brain, and Owen's focal point is the entire right side of his brain, this did not seem like a good option to us.  After much scrambling by our neurologist and neurosurgeon and their staff the doctors were able to convince them that this surgery actually was the best way to go.

I know we had said that we were considering the possibility of trying the meds for a while longer, but he had a big seizure with 20 minutes of full body convulsions (even with two Diastats) last Sunday.  Even if the VNS doesn't prevent the seizures altogether, you can use the wand to shorten them and that is becoming increasingly important.  And it should help even out his mood.

So we are sitting in the waiting room.  We've talked to Dr. Grant - the neurosurgeon - this morning, signed all the forms, and now we're just awaiting our spot in the OR which should be in the next few minutes.  Owen is not minding the wait at all:

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He fell asleep out in the main waiting room and has stayed asleep while we've been checked into a pre-op room.

Last night I had the wonderful fun of meeting the Gibbs family.  Their daughter Claire is probably being born even as I type this, or will be very soon just two floors up from where we are sitting.  I met them through the website and since we were all here we thought it would be fun to get together for dinner.  Here is me, Amy and Owen (and Claire still snug in her Mommy's tummy)

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And a group shot of Amy, Brad, Owen and Claire:

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It was fun to sit and chat and I'm really hoping that we get to meet Claire before we leave. 

At the end of our visit I was walking out the door when I realized that Owen's drinking bear was gone.  Amy and Brad were so very kind to help me search high and low for it, but it was nowhere to be found.  So Owen and I made a quick trip to Kroger where I bought a honey bear and some straws to make temporary replacement:

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As you can see, he drank almost the whole thing this morning so it looks like we have something that will work for the next two days. 

After Owen's surgery we will be admitted overnight.  This is normally an outpatient procedure, but since we'll be working on the same side as his shunt tract they want to give him IV antibiotics just to be sure that the shunt is safe tonight. 

I'll update more as things progress today.  They say they'll be back in 20 minutes to bring him to the OR.  The surgery lasts for an hour to an hour and a half, and the prep will take 45 minutes and the cleanup usually takes a bit too. 
 
It's All the Rage
It has been almost a month since I last blogged.  Usually I apologize for long lapses, especially when there has been a lot going on that I should be blogging.  This time I won't.  Believe me, it was better for everyone that I didn't.  I have spent the last month, well two months really, in what author Douglas Adams affectionately called the "Long Dark Teatime of the Soul".  Usually I can stay positive through the pediatrician visits where kids a quarter of his age call Owen a baby because he's in a stroller and they aren't.  I can generally tell myself, "But just look at what he can do!" when I cut up his food and realize that I'll probably still be cutting up his food when I'm sixty.  But for the last two months I have failed at the whole positive mental attitude thing.  The last two months have been, in short, a long hard slog.  Thankfully, things have improved, but I don't think I was ready to blog until they did.

You see, until just a day before Christmas Owen had spent a great deal of time screaming with some unknown problem.  Was it rage from the Keppra?  Did he have a headache?  Was it because he hadn't slept in a week?  Why hasn't he slept more than a few hours at a time for the last week or two?  Was it the shunt?  Was it his belly?  Owen can't talk.  He can't tell us what is wrong.  And can there be anything more frustrating that knowing that something is very wrong but not being able to figure it out? It went from just some whining here and there to outright rage attacks once or twice a day to rage attacks several times a day and night.  And he just couldn't sleep even though we were pumping huge amounts of sedatives in the boy.  My nerves were shot.  The positive mental attitude goes out the window at 2:30am while your kid is biting himself, you and anything he can get ahold of. I did not comment much on blogs or on Facebook. 

So we went through the usual checklist.  We checked the shunt just before Thanksgiving.  We tried every med known to man in attempt to get him to sleep.  And then we noticed that he hadn't put out any poo in a few days so we gave him an enema.  And he put out 2 pounds, 2 ounces of poo (Sammy thought it would be funny to weigh it).  This was about two and a half weeks ago.  The next day we gave him another enema just to be sure and got another pound.  We gave him another day or so and still he didn't go on his own.  This started a long string of Miralax and enemas that produced very little.  We hadn't thought much about poo at first because although Owen used to have lots of problems in that area, he had been much better since he had gotten more mobile and things had been running smoothly.  But that was before Keppra, which is constipating, and the pneumonia which kept him lying down most of the day.

Finally it was three days before Christmas Eve and Owen was screaming a large portion of the day and night.  No amount of intervention would bring on the poo.  It was time for the big guns to come in.  I took him down to the hospital for an xray of his belly and they found that he was pretty well filled to the brim.  They sent us home with more laxatives and different stuff to try.  They did nothing except make him even more uncomfortable.  It's now two days before Christmas Eve and we head for the ER.  He was admitted overnight for a cleanout. 

They placed an NG tube and pumped three liters (yes, that's three LITERS) of a nifty liquid called GoLytely.  It is pronouced GoLightly, proving that manufacturers have a sense of humor.  Oh, and I must say that the poo jokes shared on Facebook by my friends definitely improved the tone of our experience!  Things went well for a few hours.  My brother stopped by with some necessities (when the doc set up the whole thing his nurse failed to tell us that rather than the 1 hour massive cleanout we had done previously, they would be doing it more slowly and we would be admitted for at least a day).  Just as my brother went to leave Owen started seriously raging.  Versed, Valium, nothing had an effect.  My brother gets the gold star for staying there with me to hold him down so that he couldn't pull out the NG tube.  And my Mom and Dad get the gold stars for cooking dinner and throwing the family Christmas party that night while I sat in the hospital awaiting poo. 

At about 5:30 the next morning I woke up to the sound of Owen filling his crib in one horrifying whoosh.  After levitating him above the bed to change out the sheets I got him cleaned up.  It was a lot but I figured that there was more to come.  I had no idea.  At 8:00am the doctor came in.  I hadn't met this GI doc before, but I do like him.  He was covering for our normal guy over the Christmas holidays.  He came in and said he needed to do a little checkup to see how Owen was doing.  If you are squeamish you probably should skip to the next paragraph, but it's just too funny not to share.  So the doc puts his finger up Owen's bung, and then a few fingers, and then suddenly he reaches in and says "This will make him feel better".  Apparently there is a button that you can push somewhere about wrist deep in a kid's abdomen that will release the world's largest fountain of poo.  It hit the crib walls, the floor, and formed a complete lake around Owen.  It was the single most impressive thing I've ever seen.  And he was right about how it would make Owen feel.  I sadly didn't get a video of the fountain, but after cleaning him up, this was Owen's expression:

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A few hours later we headed home.  He was much better that night.  He was still somewhat cranky on Christmas Eve, but it took a while to completely clear all 3 liters of that stuff.  Our Christmas miracle was that Owen was in an absolutely great mood all day.  No rages.  I didn't get bitten, scratched or pinched all day.  How cool is that?

Owen has continued to be much happier.  He still doesn't sleep past 4 or 5 in the morning, but he's just up there playing instead of screaming.  I don't know that he could be in school yet because he still wants a nap at about 10:00 in the morning. 

His VNS surgery is scheduled for January 5th.  We are on the fence about it.  Owen has not had a seizure since starting the Keppra.  Without the pain of the belly issues, he is actually in a pretty good mood most of the day - the Clonidine is doing its job at leveling out the mood.  But there are some down sides.  He doesn't seem to want to pull up to stand much anymore.  He can't seem to quite get himself onto the couch - he's lost some strength during the last two months.  And he still has a tendency toward going off the handle if you ask him to do anything he doesn't want to.  And he still can't sleep. And it constipates him. We are going to reassess at the end of this week.  

So, I apologize for not being around the cyberworld much lately and for being a grump to those who have dealt with me in person.  As Owen's mood improves so does mine for the most part.  I still have some issues to work out - I have degrees in physics and computer science and I expected to use them.  Being a babysitter and housekeeper with no creative outlets just doesn't work for me.  I love to teach too, and I enjoyed being with Owen at school - but he hasn't been in school since October.  And teaching a child that if I work with him all year might manage to put the paintbrush onto the paper to make a mark without me holding his hand is not exactly sharing my knowledge with others. Though it is still way better than being in the house everyday.  And yet there is no way that I could have a regular job even if we got an aide to go to school with Owen.  Owen has been in and out of the hospital over and over again during the last few months.  How could I make a coding deadline and commit to deliver anything if I have to keep taking time off without warning to take Owen in to get cleaned out or scanned or whatever?  And that's not even counting therapy and doctor's visits.  My only hope is that he will settle down enough soon that he'll at least be able to go to school, and maybe we'll find a respite worker again that can give us a break now and then.  

 And now I have said my piece.  I thought long and hard about whether or not to share my teatime on this blog.  But I committed early on to sharing the good with the bad and it's not realistic to think that you will go through year after year of dealing with medical issues without occassionally having some rough emotional patches.  While I was in the hospital with Owen once a doctor suggested that I see about getting anti-depressants because I seemed a bit down.  I asked him if it would make Owen's situation suck any less.  I pointed out that clinical depression is when you are depressed even though you are in a situation where you should be happy or at least neutral in normal life.  Being thrilled while you're dealing with a very depressing situation is a sign of dementia in my book.  It wasn't normal for me to be happy about that situation and it is perfectly normal to have times when it just isn't easy to cope with looking at a lifetime of having your life interrupted by medical issues. 

I always try to leave on a positive note and today I will do the same.  We were very thankful to have Owen's biggest issues taken care of by the time Christmas came.  I will close with a picture of a very happy Owen hanging out with his sister and grandparents on our couch:

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For now I'll just be thankful that he is no longer in pain and that he can smile again!

 
It's All in the Details
A few people have mentioned some details that I have left out of my posts.  I feel somewhat like our local news people that tell you about an exciting new store opening up but don't bother to tell you its name or where it's located.

So, to clear up the confusion - we are home.  We came home late Sunday night after the seizures.  Owen has not been admitted for his pneumonia, we are hopeful that we caught it early enough that lots of rest, fluids, antibiotics, humidifiers and warm air will take care of it.

Owen's neurologist wrote back to us this afternoon and said that he thought it was a good idea to put Owen back on the Keppra until the surgery.  We didn't like the side effects of the Keppra, but we hopefully have a strategy to minimize them this time.  We didn't like the side effects of the other meds we tried either, but at least the Keppra had the added value of actually stopping the seizures.  We started him on it tonight.

I am more at Peace tonight.  We had wished to have the surgery sooner but you don't always get what you wish for.  We have a plan, and that's just the way it's going to be and so that's that.  Time to move on to other things that I can actually change.
 
Fun, Fun, Fun!
So, the aspiration during the seizure must have been worse than they thought in the ER because Mr. O now has pneumonia.  Which means that he won't be having any type of surgery any time soon. 

The next available slot for the VNS surgery was December 22nd.  I wasn't comfortable with this because it is three days before Christmas - if there are any complications there isn't likely to be anyone around to deal with them.  So I had opted for a January 5th surgery date.  I had tried to argue for sooner than the 22nd, but that was before I knew about the pneumonia.  Owen had been doing better yesterday and was finally up and cruising around like his normal self - but his temperature was still higher than it should be.  Still, I figured that it meant that things were taking a turn for the better.  Well this morning his temperature was shooting up again and he was miserable.  His cough was much worse and he fell asleep after breakfast and was panting a bit.  It was time to assume that this wasn't just a cold.

The pediatrician confirmed that it is in fact pneumonia.  It's still in the pretty early stages so we are hopeful that a round of oral Clindamycin (antibiotic) will take care of it. 

In the meantime we're talking to the neurologist about possible meds that we could put him back on until January to slow down these seizures a bit.  Hopefully they will come up with something soon.  I have suggested perhaps going back on Keppra.  It caused him to rage in a scary way, but it was the best at stopping the seizures.  Owen is on Clonidine to level out his rage and manic (too happy) swings and that is working well.  I am wondering if the Clonidine might not also level out the Keppra rage.  If so, Keppra can be brought on fairly quickly and might be of help at least for a while.

Hopefully I'll be able to post some cheerier news soon!
 
I forgot to mention
That Owen is now resting peacefully in the ER. His lungs have cleared and hopefully his temp will come down.
 
No Surgery for Owen Tomorrow
We were on our way to Durham for Owen's VNS surgery tomorrow when he had a pretty nasty seizure. After 25 minutes I got him to cough enough to clear what he had aspirated, but then he started seizing again. Two seizures in 25 minutes and his core temp crashing = trip to ER. Owen's temp is 101.6 so he is clearly sick and therefore they won't do the surgery tomorrow. We never made it to Duke, we're still in Roanoke waiting to see if the Tylenol brings down his fever.
 
Surgery Set for Monday

Sorry for the delay in posting details, I took a day or two off for the holiday.

On Wednesday we finally got the situation straightened out for Owen's VNS surgery.  I do not like the way I had to go about that.  I do not like to get what we need by being that forceful.  I simply felt that it was time that neurology began to feel the urgency that we did about the situation.  Since we began trying to get more aggressive about Owen's treatment in August it seems that every step has been a long waiting process.  Need a seizure study?  Fine, our first available is 8 weeks out.  Had a really horrible event this weekend?  It'll be three days before we call you back and you'll have to call a few times to remind us that we need to call you back.  If you don't then it will be five days before we return your call if we even bother.  Oh, and if you call and tell us that the med is making it so that he can't even stand up we'll tell you to double it because we're not listening to you and just heard that he had a bad seizure on it.  I am tired of watching Owen regress while people tell me about their scheduling problems.  The VNS might not help him, he might be part of the percentage that gets no benefit from it.  However, it's certainly not getting better on its own either and if it might help then we must try it and waiting another month isn't going to increase the odds of it working - but having it sooner will possibly save him from a month of anger, seizures and unpleasantness. 

So I wasn't leaving on Wednesday until we had a plan.  The ER docs felt so strongly about the situation as they saw him swing between manic and raging all day and hearing about the increased seizure activity we were seeing that they said they would not release us from the hospital, unless we did it Against Medical Advice, until we either had a surgery date that was close in, or a plan for seizure meds if it was going to be several weeks before the VNS.  We left the hospital with Clonazepam, which you can use when it looks like they are working on a seizure.  Lately Owen's mental status has been changing in the hours before a seizure - almost like he's having absence seizures leading up to the biggee.  He gets angrier and he has trouble focusing on things and stays still for long periods.  We tried this yesterday when it was really looking like he was slowing down and it definitely helped.  They had also prescribed Clonidine on Monday night to help level out some of the rages and manic episodes - I do think this is helping as well.

The VNS will be implanted on Monday (November 29th). We have to be at the hospital at 9:30am, his surgery is scheduled for 11:30am.  It is a fairly simple procedure compared to the other ones that Owen has had done.  If you want details go to my entry from the other day here and scroll down to the VNS heading.  I'll post updates as soon as I know anything on Monday. 

As always, I thank everyone for the amazing support that they have shown us in the last difficult month.  Let's hope that we are on the path to getting back to something manageable!

 
A Not So Fun Day
So it all started last week.  Owen had had a great day at school on Monday - best he'd had in ages.  I do not remember much about Tuesday, but I do remember having a good speech therapy session, although he was a bit cranky.  On Wednesday morning he had a seizure on the way into school.  A little one, but I did have to put some oxygen on him. We went home to sleep it off.  On Thursday we tried to go to school but he whined and wailed for the hour that we stayed.  I took him to the pediatrician that day cause he was running a little temp by then and wasn't eating.  He said his throat looked a bit red but the strep came back negative and he thought it was just a virus.  So we went back home.

On Friday we brought Owen down to see Dr. Gallentine, which was the subject of my last post.  Owen wailed and whined through the whole visit but he was sick and he was in a doctor's office so I figured that was it.  On Saturday morning he was back to eating and seemed healthy enough, but that morning he broke into a rage that was so bad that Mommy, Daddy and Owen all had bloodstains.  He bit and scratched us and him and bit through his lip and wrist til they were bleeding.  This was a fairly ugly scene that we had not experienced since he was on Keppra.  The rest of the day he bit his wrists and palms on and off and was generally pretty fragile in what would set him off.  On Sunday he was happy most of the day, but we just left him alone and asked absolutely nothing of him.  He ate fine.  That night I picked him up to put him into bed and he suddenly went off in a rage that lasted for a half an hour and once again left both me and him bruised and bloody.  Not good. 

On Monday (yesterday) I called the neurologist's office in the morning to say that things weren't going very well and that we needed to address this issue.  That rather than waiting until sometime in December to do the VNS, maybe we should do it SOON because it has a real mood leveling effect.  I got a call back from neurosurgery scheduling that morning, but they called my house and I was at school with Owen and by the time we came home at 1:30 she had left for the day.  As for Owen as school - I only brought him in for about 2 hours and I didn't try to bring him into the classroom or the cafeteria where he might get too much input. I just brought him into the quiet therapy room and ate lunch while I talked to his special educator (Ms. Pat).  After lunch Ms. Pat and I took Owen out to the playground to sit in the warm sun - it was almost 70 degrees out.  When she tried to pick him up he tried to bite her.  He loves Ms. Pat.  Then the music therapy people were there so I thought he could stay for that session because it's his single most favorite thing in the world.  He whined and cried through most of it and did not participate at all.  We went home.

By the time we got home at 1:15ish, Owen just didn't look right.  The eyes are open but nobody is home look.  He would drift away and then suddenly seem to come back to himself. Even earlier that morning at PT, which we do at home, Ms.Nacol said that Owen just wasn't making eye contact.  But still I could rose him if I poked at him so I wasn't sure that it was a seizure.  At 4:28 though the seizure finally came - desat, shaking, wretching, the whole bit.  It passed very quickly and I didn't even need a Diastat, but it was definitely a seizure. 

I called neurology for the second time that day and asked 1) why on Earth hasn't anyone called me back yet, and 2) um, he's been raging for 4 days, ends in a day where he looks wrong all day long -  can't we fix this?  I yelled a bit.  About 15 minutes later the neurologist himself calls me back.  He prescribes a drug that should level out his moods, though it doesn't do anything for seizures, I can't remember right now what it's called.  We agreed that a CT scan was in order to be sure that the shunt wasn't aggrevating anything and that he would try to get the VNS fast-tracked and we would use this other drug in the meantime.  Owen woke up in the best mood ever 4 hours later, as if a reset button had been pushed.

So, this morning I headed out for Duke at 7:30 am.  Owen was barely awake.  As the trip went on it became clear that he was now in the "manic phase" of his swing.  This is where he is just unnaturally happy.  His body is in constant motion, arms, legs, head, everything.  He cannot stop and sit still.  This is a bad day for a CT scan.  We had to go to the ER because they couldn't schedule a slot for us today.  So to the ER we went. 

They got us in for a shunt series fairly quickly and since that takes a split second they got their images easily enough.  The shunt tract appeared intact.  Then we tried for the CT scan.  First we just tried without any sedation.  Complete no-go he was just waving his arms and legs and moving his head back and forth the whole time.  So we brought him back and tried some oral Versed because we know that it isn't easy to get a line into Owen.  He went out OK, but when he was supposed to go into the scanner they had an emergency with a brain bleed come in and he got bumped (yes, I'm OK with this - we're not that bad off!)  By the time the scanner was free again the Versed was starting to wear off. So they tried twice to put a line in him to give him something that they could control better, but twice they failed to get a viable IV.  Then they tried to give him some more orally to top him off, but somehow spilled some on his shirt when they gave it to him so we don't know how much he got.  And so we tried the scan again.  This attempt was the same as the last.  Although he was pretty calm all the way down to the scanner, he woke up as soon as we laid him down and started his bit of waving arms, legs and shaking his head.  We didn't even try as it would be extra radiation for no good reason. 

Back we came and tried for an IV again.  Since he still had some Versed in him he didn't fight and they got a good viable line.  And so we waited for the scanner to be free again.  The nurse stuck her head in and said that Owen would be next and she went to get the IV Versed.  While she was gone Owen's pendulum swung the other way.  He went from too happy to screaming rage.  By the time the nurse came in I was just trying to hold him down enough that he wouldn't fall off the bed.  He blew the IV.  So, with our options dwindling the doc says our last hope is to try an intramuscular shot of Ketamine.  Not a fun idea, but it would work.  Owen has never had Ketamine before.  Since it's full sedation they had the ER doc, a person from respitory and several nurses in the room while they did the scan.  This was because there is a less than 1% chance of a severe reaction.  Leave it to my boy to find his way to less than 1%.

The scanner finished whirring and a few seconds passed by.  I was just starting to walk toward Owen when the whole crew rushed in from behind the barrier.  I looked and the pulse-ox read 58%.  For those who have not seen a Ketamine sedation, I don't recommend watching one. It's visibly pretty awful to watch.  It also increases their secretions.  And since Owen was on his back the extra saliva was making it hard to breathe.  In addition there was some swelling in his larynx.  Sats were down to 45% as they were putting oxygen on him.  They reposition him and his sats start to climb back up.  When they hit 100 they put him in my arms so that I could hold him in a good position for the short run back to the ER where they could work on him better.  Once back in our room they started suctioning him and that eased things up quite a bit.  They had to suction him for about another half an hour before he was awake enough to start swallowing again.  I finally started breathing at this point.  I am very pleased at how prepared they were for that less than 1% possibility though - very nicely handled!

We won't ever be using Ketamine again.

We got the scan though and it turns out that the shunt is fine.  I was 98% sure that it was, but that 2% could have done a whole lotta damage - look what we did with less than 1% chance. 

So as he's waking up I'm describing the situation that led us to coming into the ER in the first place to the Attending.  He thinks that leaving the hospital with him possibly having been seizing or certainly in neurological distress for the better part of the day yesterday is probably not a good idea.  I tend to agree.  Neurology sent down its recommendation - put him back on the Depakote.  To which the Attending replied - isn't that the one that made it so that he couldn't even stand up at a tiny dose?  I'm so glad that at least he grasped so quickly why it was that I wasn't thrilled with this suggestion .  As it was about 9:00 pm by this time he said that we should just admit Owen and then get some answers when the daytime neurology people were on.  I felt that this was a sane suggestion.  In the meantime neurosurgery said that they would get back to us with a schedule for the VNS tomorrow.

Owen woke up and ate dinner and then promptly passed out.  He did not sleep at all last night because the seizure knocked him out from 4:30pm to about 8:30pm and then he was awake until about 3:00am.  He did not nap today (even with the Versed on board!) and I don't think the Ketamine adventure was particularly restful.  He is sleeping peacefully and Bless the attending for telling the people up on the floor that no, Owen does not need an IV put into him in case he has a seizure and they should just let him sleep.  They can use Diastat like the rest of us do. 

So I'm left in a bit of a difficult position.  I know that his neurosurgeon would get us in quickly if he could.  I appreciate the fact that he is only one human and he can only do so many operations a day.  I feel that they need to get a third neurosurgeon so that Dr. Grant can occassionally get some sleep.  I know that there are other kids that need operations too and I don't want them to suffer either.  But I also know that Owen can't do this sort of thing much longer and stay sane.  And I know that his family would really like some sleep (I think I have slept through the night once in the last month).  Can't we somehow have it all?  Can those kids get their surgeries and Owen get his without waiting til next week at least and possibly longer? 
 
Controlling Seizures Without Meds 101

When last we met we had taken Owen off the meds because they weren't helping, and were exploring other methods of seizure control.  The last two weeks have been quite an education.  Those of you who don't care about all the details about the various types and how they are implemented can skip to the bottom to "OUR DECISION" to find out what we are doing now.  Otherwise, strap yourself in for an alphabet soup of methodologies. 

KETOGENIC DIET
An oldie but a goodie as the saying goes.  Developed in the 1920's, all but abandoned in the later 1930's after the development of anti-epileptic drugs (AED's) this diet has seen resurgence since the 1990's when some high profile cases got a lot of publicity. The Ketogenic Diet (keto) is usually described as a high fat, adequate protein, low carbohydrate diet. And by high fat they mean a 4:1 ratio of fat to carbs/protein. In other terms, the diet is usually around 90% fat.  Why?  Normally the body burns mostly carbohydrates for energy.  By removing most of the carbohydrates from the diet, the body is forced to burn fat for energy.  As the fat is burned the body produces ketones.  The general idea behind this diet is that for some unknown reason these ketones help to prevent seizures.  In fact there is a very good success rate with this diet.  Percentages vary depending on who you are quoting, but it seems that about 2/3 of people have a significant reduction in the number of seizures that they experience, and it has a very good rate of stopping seizures altogether.

The diet is initiated in the hospital, with a 4 or 5 day admission during which the ratios of fat to carbs and proteins are tweaked until they get the desired number of ketones.  The high fat diet is nutrient poor and so multivitamins must be administered.  Periodic blood tests must be administered to test for nutrient levels and to check for ketoacidosis - a condition where the blood pH is lowered due to the presence of too many ketones.  To be certain that there is enough protein in the diet for normal growth, weight and height must be monitored. Other possible side effects are constipation, nausea and low energy due to lack of carbs.  All food has to be weighed and portioned exactly and cheating on the diet will most likely bring back the seizures.  To achieve the necessary levels of fat large quantities of heavy whipping cream are usually consumed, butter, eggs and mayonaise are other common ingredients.  Since Owen is allergic to all of these things, we would have to make it up with coconut oil, MCT oil (see below), RCF (no carb soy formula) and other creative measures.  If a child is entirely tube-fed, then this diet is much easier to achieve.  You switch their intake to KetoCal formula in specific quantities and that takes care of most of it.

MCT DIET
This diet is not usually used in the United States, but is common in England and Canada.  It works on the same principals as the ketogenic diet, but it uses a different type of oil.  The animal fats in the keto diet are LCT's - Long Chain Triglycerides.  The MCT diet is based on Medium Chain Triglycerides.  You don't need as many MCT's to produce the ketones as you do LCT's which is an appealing aspect of the diet.  However the MCT's come in the form of spreads and oils which some find less appetizing and some say that the MCT's are harder on the tummy.  The MCT diet was a better solution for Owen because the oils are vegetable based and therefore he would not be allergic to them.  This diet is administered in much the same way as the keto diet with the same precautions.

MODIFIED ATKINS DIET
This diet, also known as MAD was developed by Dr. Eric Kossoff at Johns Hopkins.  This doctor was very helpful to us, answering questions via email even though he doesn't know us and Owen isn't his patient.  He was the one that introduced us to the possibilities of the MCT, LGIT (see below), and keto without diary diets.  This diet also works on the basis of producing ketones, but is less restrictive on the carbs than the classic keto.  He found that many people were able to obtain relief from their seizures while producing fewer ketones than on the keto diet.  It is still a high fat diet and still has very low carbs, just not quite as low as the keto and the portion control is less strict than the keto and MCT diets.  Since it can produce the same side effects as the MCT and keto it must be monitored in the same way. While many people do experience relief on this diet, it does have a bit lower of a success rate than the classic keto and therefore some people will start on the MAD and then move to the keto if they still need better control.

LGIT DIET
The Low Glycemic Index Treatment was developed in 2002 by Dr. Elizabeth Thiele and dietician Heidi Pfeifer at Massachusetts General Hospital in Boston.  This diet does not attempt to produce ketones, but still drastically reduces the amount of carbs that a person eats.  Since no one really understands why it is that the keto diet works, no one is sure if ketones are the actual mechanism that stop the seizures.  There is also a school of thought that it isn't the ketones at all, but a lack of sugars in the brain that stop the seizures.  While the success rate isn't quite as high as the classic keto, it does work well for many people.  The ratios in this diet are 60-70% fat, 20-30% protein and 10% carbs.  Portion size is used in a more general sense and weighing is not required.  Since ketones are not produced it is usually administered on an outpatient basis, though you still have to watch for vitamin and mineral deficiency.  Many people take the path of trying the LGIT first, then moving to the MAD and finally going to the keto if none of the previous two work.  This way you are giving the least restrictive the first try and then moving upward.  Many others start at the classic keto and then once they have seizure control start loosening up toward the MAD and LGIT until they stop having control.

VAGUS NERVE STIMULATOR
Also known as VNS, this is essentially a pacemaker for the brain.  A small device is implanted just below the collarbone on the left side with electrodes going up into the neck and wrapping around the Vagus nerve.


Photo from Cyberonics, Inc.

An electrical pulse is sent out about every 5 minutes and lasts for around 30 seconds.  The interval, duration and strength of the pulses can be programmed using a magnetic wand without the need for further surgery.  These pulses reduce seizure activity in many people, though no one knows why this works either.  The wand can also be used to initiate a pulse at the onset of a seizure, which will often stop the seizure without the use of Diastat.  The procedure to place the implant is fairly low on the scale of surgeries that most hydrocephalus patients are used to.  It is done on an outpatient basis so that they are implanted and sent home the same day without an admission to the hospital floor.  Since they are working on the chest and neck, the CSF is not touched and so there is minimal (though of course there is always some) risk of a shunt infection. 

The VNS does not have as high of a success rate as the diets in completely stopping the seizures, but a large percentage do have at least some relief.  The device is not FDA approved for children, though it has been used in kids fairly widely for many years, so there aren't any numbers to quote but our neurologist says that it seems to work better in children than it does in adults in his experience.  The most common side effects are a change in the voice during the pulse, a tingling in the neck during the pulse and coughs during the pulse. Since the amount of current being applied is programmable they can work to set the levels to keep these effects to a minimum.  These side effects also seem to diminish in most people over time.

OUR DECISION
So those were our options given the fact that we had tried 5 meds with no help and a 6th wasn't likely to be any better.  While we were doing this research we had also taken some preliminary steps at home. Due to Owen's allergies to milk and eggs, his diet has been very high in carbs for the last few years.  We turned to bread, potatoes and lots of fruits and veg to make up the difference in calories: the Anti-Keto diet.  We decided that without being on the meds we should probably try to stop doing some of that.  We did not attempt to go so far as to produce ketones without guidance - that would be dangerous - but we did try to come closer to the low end of the LGIT diet than we were so that we weren't carb loading him.  The first day was fine, but by the second day he was starting to refuse the coconut milk and refusing some of the high fat food.  By the third day he would have nothing to do with any of it, refused all food and drink and constantly signed for pears, Silk and cookies.  This was not a good omen, though we were also trying this while he had a sore throat and a possible stomach bug so our timing wasn't great. 

How did we decide?  Well in a nutshell for all of you who didn't read all of that stuff above, we looked at these pros and cons:

Diets
Pros:
  • Higher success rate
  • No surgery involved
Cons:
  • Big lifestyle change
  • What if he just won't eat it?
  • Need for blood tests which he hates
  • Possible side effects:
    • Slowed growth
    • Ketoacidosis
    • Constipation
    • Nausea
    • Malnutrition
    • Lack of energy
VNS
Pros:
  • No lifestyle change, he can eat what he wants
  • We don't have to weigh his food
  • Side effects are less scary
  • No blood tests
Cons:
  • Surgery, even if it is minor
  • Lower success rate
  • Possible side effects:
    • Change in voice during pulse
    • Cough during pulse
    • Tingling during pulse

What it really came down to was the list of Cons.  We can't just explain to Owen why it is that he can't have any of the food that he wants.  Unlike an intellectually normal child that can reason out why it is that we are ignoring his requests for pears and Silk, Owen just thinks we're being mean and doesn't understand that it's to help him and he gets angry.  The quality of life for him on the diets would be significantly lower as eating is one of his true skills.  Owen knows about 15 signs and 10 of them involve food.  He can't ask for a ball but he can tell you specifically if he wants a pear or a cookie or Silk or granola bar.  And the possible side effects of the diets seemed scarier than those of the surgery to us.

If there is a chance to have the VNS implanted and slow down his seizures enough to make life more bearable, then it seems like we should at least try that first.  It will mean taking one more step towards being the true Bionic Boy as it will be a third device implanted in his body (VP shunt, cochlear implant, and VNS).  We must also remember that Owen typically has only 1 seizure per week, less in the summer when there are no viruses around.  If we had a 50% reduction in seizures it would mean going half a month in the winter and two months in the summer seizure free.  And if the pulse initiated by the wand stopped the seizure without Diastat and before the respiratory effects set in, then the impact of the seizures would be considerably less (Diastat makes him sleep much longer than seizures that resolve without it, and it really sucks to stop breathing).  

We also consulted Owen's neurosurgeon who we have come to trust over the years and who would be implanting with the device.  He agrees that this is the next logical step as well. 

So with everyone on board, we are going to call on Monday to schedule the procedure.  If it doesn't work for him, if he is one of those people for whom the VNS does nothing, then the diet will still be out there to try. 

And just because it's no fun to close without a picture, here is a picture I took last weekend of Owen and his sister playing with an old rake:

 
Against Medical Advice
Most parents who have been at this a while have encountered the letters AMA in their paperwork somewhere.  They stand for "Against Medical Advice".  These nifty little letters are a medical professional's insurance against being sued by placing the responsibility completely in the parent's lap.  I have been seeing a lot of these letters lately.

AMA for turning away the trip to the ER after the rescue squad was kind enough to come after I panicked because Owen's seizure was so different than anything I had ever seen before last Sunday.

AMA for removing the stupid cardiac leads during the seizure study that had to be replaced every 15 minutes (no exaggeration!) because they wouldn't stay on when he rolled over.

And today we are AMA for removing Owen from his seizure meds.  This has been one of those long and agonizing decisions.  We have never really seen any consistent improvement in either the frequency or severity of his seizures from any of the 4 previous meds that we had tried.  However we had seen LOTS of side effects. We left the hospital last week on a new med - Depakote - and we had left all of the previous ones behind.  We left on a very low dose because the doc knew that Owen is very sensitive. 

On Sunday Owen had the BIGGEST SEIZURE EVER that we were waiting for so expectantly in the hospital during the study. Full blown Hollywood style grand-mal (aka tonic-clonic) thrashing about seizure for minutes. It was preceeded by about 10 minutes of staring off into space which I had mistaken for him falling asleep in the back seat of the car.  My 8 year old daughter gets the big gold star for realizing that he was starting to shake and that he was getting worse as I found a place to pull over.  She also talked to Daddy on the phone and told him to call 911 and where we were while I was busy administering Diastat and keeping him from bouncing himself out of the back of the car.  She's an amazing little girl!  Thankfully the Diastat worked and disaster was averted.

So when he was off the meds he had the tiniest seizure ever and just four days on the new med we have the biggest one ever. And only 4 days!!  Through 4 previous med changes and off the meds before that the closest they had ever been was 7 days.  I know that all of the changes of yanking the meds off and then putting him back on have made him vulnerable and that his dose is so low that the doc said he might as well not be on any meds yet, but still it was a bit unnerving. And then there are the side effects.  We've been on the Depakote for just over a week and already his little arm is scabbed and bruised from biting himself.  He starts out the day in a great mood until he gets his first dose and then you just watch the anger build. He's a miserable zombie that can't even stand up until about 6:00 at night when it starts to wear off when he starts smiling and laughing again.  Then we hit him with the bedtime dose at 7:30 and by the time I put him in bed at 8:00 he's biting me as I lay him down.  And either the Depakote or the Carnitine (to stop liver damage from the Depakote) is really irritating his stomach so that he's either reluxing or actually throwing up every few minutes.

When I finally got ahold of the neurologist (third time's the charm!) today his advice was predictable - we knew this wasn't a therapeutic dose yet, he had a bad seizure, double his dose.  And that's when I realized I couldn't do it.  Double the dose on something that wasn't really likely to work any better than the previous 4 meds at controlling the seizures (we've been told less than 10% chance after you've tried more than two or three meds) but was obviously going to cause all of the same problems as the other ones did.  I told her that we weren't going to do it.  That both Daddy and I have discussed it and it's time to stop torturing him on meds that aren't likely to work.  It's time to see if that little seizure off the meds was a fluke, or are the meds actually making things worse? 

We were told again that by removing him from the meds we were putting him at a greater risk of a seizure that can't be stopped.  We know that.  I also know that the meds weren't really doing much of a job of stopping them either.  We know that the doc would really like us to give Depakote more of a chance.  But this afternoon I took Owen to meet a group of seizure dogs and their trainers and instead of getting to know Owen and how he interacts with dogs (which is usually well) all they saw was Owen whining and wailing.  His tummy is bothering him because he can't stand up and stretch out the GI tract because the meds have sapped his strength and ruined his motor control.  It was a disaster.  They actually brought a dog to sit with him during the whole training session to calm him down.  But like clockwork at about 6:00 pm as his levels dropped he started smiling and laughing on the way home.

I didn't give Owen his nighttime dose and tonight he smiled at me and snuggled as I put him in bed.  We have Diastat nearby every moment of every day and Diastat has always worked to stop the seizures whether he was on other meds or not.  We have enough respitory equipment here to stock an ambulance and we are prepared.

The neurologist's office is going to call tomorrow about dietary options.  Owen can't really go on the ketogenic diet because he's allergic to milk and eggs, which are two of its main ingredients. But we are looking at a Modified Atkins diet that might help him. We tried the meds for a year and three months and now it's time to start looking elsewhere.

I also found a cool product tonight and ordered it.  Since we don't have the dog yet, I thought this might help in case Mommy is too tired to hear a seizure at night:  Emfit Monitor  Owen has never actually had a seizure at night, but all bets are off with no meds on board and I'll take every little step I can.

So, that's where we are right now.  We'll just wait and see what the next few weeks bring.  I have some pictures from the last week, but it's too late to start fussing with them now, I'll put them up in the next entry.  Good Night!
 
Seizure Study - Up, Down, Up

I know I haven't blogged in a few days, but entries that read "Today he absolutely failed to have a seizure" get boring after a while.  Then last night we had an "event".  Those of you on Facebook are probably wondering about the "Yippee" entries and then the completely, horribly depressed entries, and then the "Yippee" entries again - all about the same event.  So for those who are wondering about that and for those not on Facebook who are just wondering where we've disappeared to, here's the scoop.

After several more days of nothing useful happening we were sitting here yesterday at 5:30 pm thinking that the dinner trays should be arriving soon.  Owen was in his crib playing and laughing at a book.  I was crocheting and Mom was reading a book.  The dinner trays came in and I said "I'll finish this group I'm working on and then we'll start the dinner proceedings".  I look over and Owen is still happily playing.  I finished my little group, maybe two minutes, and then I get up and walk over to the trays and then I hear it - the sound of Owen throwing up which means seizure.  Now for the last 10 days they have been warning us that the first seizure off his meds is likely to be "THE BIG ONE".  We pushed buttons, called for nurses and sprang into all kinds of motion. 

Owen's eyes were definitely wandering, he was not responsive and then he fell asleep.  No shaking, no oxygen level drop, he just went to sleep.  Which left a whole room of doctors and nurses and Mommy and Grandma saying, "Was that it?"  No Diastat, nothing - he just went to sleep.  So now we start asking, "Was that really a seizure?" It certainly looked like the normal start of one, but generally they don't end unless we intervene.  Neurology was on the phone during the "event" and said they would look at the EEG and be down to tell us what they saw.

Two hours go by.  Owen is still completely out and nothing we do will wake him up so that he can eat his dinner and not wake up at 1:00am.   No neurologists have shown up.  The daytime shift had gone home before the event and it was the nighttime on-call guy that we were waiting on - otherwise known as the Fellow who is never allowed to sleep until he can become an Attending.  The nurse pages neurology, another hour goes by. She pages them again and some random doc comes in to tell us that neurology is looking at the EEG even as we speak and will be by shortly.  Another 45 minutes goes by and the nurse pages again.  Finally some guy I don't *think* I've ever met comes in and announces that they found nothing on the EEG.  He says that the Attending (our normal neurologist, Dr. Gallentine) will check it more thoroughly in the morning but that they didn't see anything at all at the time we pushed the button.

So our excitement over the idea that we might have finally caught a seizure on EEG evaporated and we were all pretty bummed.  I went to bed in a pretty foul mood.  Owen woke up at 1:00am and wanted food.  I finally got him back to bed around 3:00am and dozed on and off until 8:30am.

This morning the lesser trained minions came in one by one all excited saying that they heard he had a seizure.  And I had to explain that the nighttime guy seemed to think that there wasn't anything there.  But they all wanted me to describe the "event" in detail and so I did.  Then at about 10:00 the man himself, Dr. Gallentine, comes in and says "Yippee, we got a seizure!" (And yes, he is the type that would say yippee - he even did a seizure dance with us one day in hopes of bringing one on).  Somewhat perplexed I asked him then why they said no last night.  And here's the deal: we have always assumed that the vomiting and such was the BEGINNING of the seizure, and so did the nighttime guy.  So he took our button press as the beginning of the seizure and found nothing there.  Dr. Gallentine however thought this morning to go back in time a bit and it turns out that it was the END of the seizure.  It was a very mild seizure, which was obvious from what we saw, but it was definitely a seizure. 

So what did we learn?  The first thing is that Owen is not a candidate for surgery to stop the seizures.  What you hope to see is a single point in the brain where the seizure begins.  Then you watch several more seizures to see if they all begin in the same place and if you you may be able to remove that little spot that is causing the seizure.  Unfortunately it is rare that kids with lots of brain damage have a single focal point for their seizures and Owen is no exception. A large portion of the right side of his brain was involved even with this minor seizure and so there is no little focal point to remove.  This also means that we don't have to try and catch more seizures because we already know that he can't have surgery.

We were somewhat intrigued however that rather than THE BIG ONE we had the World's Smallest Seizure with him off the meds.  This really makes us wonder whether or not we should put him back on any meds.  Owen has gone back to being the happiest boy ever in the last week without meds and I don't want to lose that.  However the neurologist really believes that all of the extra background stuff  he is seeing since Owen came off the meds is putting him at a pretty high risk of big seizures.  He really wants us to try one or two more meds before giving up on them.  However we are going to start very small and he does not feel that Owen should ever be put on a cocktail of drugs like he was before.  Some kids are on as many as 4 or 5 meds at the same time, though 3 is more common.  However for Owen the side-effects seem to really multiply quickly and so it just doesn't appear that he can tolerate that. 

So, we are trying him on Depakote starting today.  He's going to have two doses today and then after his dose in the morning he can go home.  He said he was also going to start looking into what the possibilities are for a ketogenic or Modified Atkins diet might be for a kiddo with allergies to milk and eggs, which are the main ingredients in those diets.  Finally, if we try a few more meds and the diets if they are even possible for him and they don't work then we will start thinking about implanting a Vagus Nerve Stimulator. You can Google that one for now and I'll give more details later, but it is essentially a pacemaker for the brain. 

It has been a rough 10 days and we weren't sure it was going to be worth it, but in the end we got what we came for.  And I also got to see my happy boy again and now that I know he's still in there I'm not going to give him up.  And since we didn't have THE BIG ONE his doc is willing to accept that he might well be someone for whom the meds actually make the seizures worse so we'll be keeping an eye out for that.

So, tomorrow we go home!!!!!  That will be sooooooo nice to get back to our own world again.

I do have a few pictures that I have taken over the last few days to make up for all of these words that I have typed!

Happiness Is....

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a smiling Mylar balloon from Grandma!

We did some more schoolwork to pass the time.  We got some construction paper and a glue stick from the Child Life room and I cut out shapes to glue onto some black paper.

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For an hour or so in the afternoon we could take Owen off the pulse-ox (still attached to the EEG though) and let him climb on the little bed that they give parents to sleep on.  He loves to look out the window:

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And now we are just starting to pack stuff up to get ready to leave tomorrow! 

 
Seizure Study - Days 5, 6 & 7
We're still here!

Those of you on Facebook know that we had a rough evening on the night of day 5.   Owen had blown yet another IV and they were placing his 4th one.  Despite me asking repeatedly for some kind of sedation to take the edge off the IV tech proceeded saying that it was not possible to sedate for an IV.  It was his 5th traumatic procedure in 5 days and it was getting to be too much to have 4 people holding him down while he screamed.  He also planned to put the IV in the top of his hand, which would require his hand to be immobilized.  Owen is deaf and uses his hands to sign - even with his cochlear implant he still signs more than he speaks.  I also pointed out that he would no longer be able to pull to stand up and would have difficulty feeding himself.  But the tech said that it was the only viable site he could find. 

By this time he has been poking and prodding to find a site for like 10 minutes and Owen is just frantic.  What I should have done was to kick the tech out at this point, by body tackle if necessary, but for some reason that I will never fathom I did not.  He placed the IV in the top of his right hand.  He then placed his hand flat on a board to completely immobilize it - with me standing there telling him how this isn't going to work the whole time.  He had the hand secured to the board with nothing covering the actual line - it was just taped down.  When he went to take the tape off the old line - which we had left in until we had a viable new one - Owen brought his arm up to bite his wrist, which is a nifty new habit that he has picked up, and nearly bit through the line. And then Owen starts staring off into space and then goes to sleep while they are taking off tape.  I'm just a touch concerned about that, but back to the tech - So I explain that he will have to find something to put over the top of the line.  At this point the tech just walks out of the room.  I wait a couple of minutes to see if he has gone to find something.  When he doesn't return I walk out into the hallway and find him writing in Owen's chart.  I ask him what his plan is since we still have an unprotected IV and he says, "Unprotected, in what way Ma'am?".  I said, "Well, you just saw him try to bite through the line, that's probably not a good thing."  To which he replied, "That's the nurse's problem" and walked off the floor.

So Owen is now passed out cold, the line is unprotected and the tech is gone.  The nurse jumps into high gear and finds anything and everything that might cover and protect an IV.  We spend a half an hour trying different things until we manage to get something on him that looks like it might actually last through the night.  And now Momma Bear is downright pissed off.  They worked on my son for so long that he actually passed out.  They placed a line in such a way that he wouldn't even be able to talk to me.  The charge nurse was called in and told that no one was to touch Owen again except to flush the line until neurology came by in the morning.  No vital checks, no pokes, no prods, nothing.   It took my Mom, my husband and my friend Jill to talk me out of my tree so that I didn't head down and find that tech and do something painful to him.  I also had to calm down enough to not just pack Owen up into the car and head home that night. 

The next morning I told neurology that they had to either sedate him and move the IV to a more appropriate place - he had a leg that still hadn't been used - or they could provide medical transport to another facility where they might actually care about what they were doing to the kids.  You see it is somewhat dangerous to move Owen right now as they have taken away all his meds.  We won't know until he has another seizure whether or not having gone off the meds will cause it to be a much more severe seizure.  We could get halfway home and find ourselves in real trouble on the side of the road.  The doc was somewhat shocked at what happened.  He ordered the IV to be removed and to rely on Diastat in the event of the seizure, which seems reasonable considering Owen has always responded well to Diastat.  This way the only thing Owen has attached to him is a pulse-ox and the EEG, which is a manageable set of things that don't really impede his normal movement.  He also wrote orders that no more procedures are to be done that involve more than minimal pain or restraint without sedation.  We're not talking about knocking him out completely - just giving him goofy juice (Versed) or chloryl hydrate to take the edge off. 

So we decided that we need the data too badly to leave now and wait a few months to get on someone else's schedule.  And now that Owen is finally comfortable and being treated as a healthy person waiting for a seizure, rather than a critically ill boy needing round the clock care, it has become a more bearable situation. 

This evening we had something that we wondered if it might not be a small seizure.  He was very tired - Daddy and Sister came down today for a visit and Daddy really wore him out with playing.  He was standing up in the crib and his eyes started to roll back in his head and he started losing his balance.  I jumped up and helped him to sit down where he promptly closed his eyes and went to sleep while sitting up.  Now long time readers of this blog will know that Owen's ability to fall asleep anywhere is a bit of a running joke.  I have pictures of him asleep on top of a therapy ball while his therapist was bouncing him, falling asleep in his stander, etc.  And yet it still doesn't seem quite normal to fall that much asleep while upright.  So I logged it as a possible event and we'll see if there was anything tomorrow when they read the EEG.  Either he had a small seizure, or he just isn't bright enough to sit down when he's that tired.

We also met with his normal neurologist today for the first time as he is now on floor rotation.  This was an enlightening experience.  Every time I have asked the neurologists whether or not they have seen anything they just say no, not a thing.  Well today Dr. Gallentine came in and said well it isn't a clean reading either.  I was a bit shocked and explained that Dr. Smith had told us that he hadn't seen anything.  You see Dr. Gallentine specializes in epilepsy and seizures but I am now finding out that Dr. Smith is more of a general neurologist.  So Dr. Gallentine took the time to really explain exactly what he is seeing.  He says that Owen's EEG does show what he called spikes and sharps which are two different abnormal shapes that are showing up now and then throughout the day in an area of the right side of Owen's brain.  These aren't seizures and they haven't seen anything that looks like a seizure since he got here, but these abnormal bursts could potentionally lead to a seizure.  He also said that they have seen more of these shapes since he went off the meds completely.  This seems like information that might have been useful and does mean that perhaps the meds were helping somewhat.

So we still haven't had one of Owen's typical seizures and are therefore still waiting to see one.  It has now been seven days since his last seizure and that means the clock is now really starting on his next one because they have never been closer than seven days apart, but they are often between seven and nine days apart.

And now for the pictures.  Just because Owen is out of school doesn't mean that he doesn't have any work to do.  They have encouraged us to keep him doing as many normal activities as possible in a crib and chair to keep his brain as active as possible.  Ms. Pat, Owen's special ed teacher, was kind enough to gather up some stuff for him to bring on the trip.  Here he is putting some sticky stars on a piece of paper on his slant board:

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And yes, Ms. Lori - those stars have glitter on them!  We also tried out the cool easel Ms. Pat got for him:

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Owen's sister Sammy and his Daddy came down for a visit today and it was a nice break.  Grandpa came down on Friday and these visits have really helped to keep us from getting too stir crazy.  In honor of Halloween Sammy had put on a dress as part of a fairy costume, but she forgot her hat at home.  I brought a skeleton costume for Owen figuring that we would still be here for Halloween.  Sammy climbed up into Owen's crib to take a picture:

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Absolutely priceless!

And now we just go back to waiting!
 
Seizure Study - Days 3 & 4
So, we're still here and no seizure recorded, and we're still having no plan to leave anytime soon.  After many discussions and much growling we were able to get some things settled yesterday.  The annoying cardiac harness was removed - Owen does not have cardiac problems and no amount of tape/adhesive/gooey stuff could keep the leads for it on.  The IV was re-wrapped so that it could be checked without removing bandages everytime.  I think we have things down to a manageable situation now - it was a much more peaceful night.

So far the most interesting thing we have learned is that they have seen absolutely no seizure activity, even when they removed nearly all of his meds.  As of 1:30pm today all of his meds are gone now and we'll see tomorrow morning if that produces anything.  I'm not actually all that surprised that they haven't seen anything yet as we have had many EEGs done in the past (4 I think) and none of them has ever shown anything except one that was taken while he was post-dictal (knocked out cold by a seizure) and that one just showed some slowing of brain activity.   This is why we've had to go to long term monitoring, we aren't going to learn a thing until we can catch him in the act.

They say that they normally want to catch 5 or 6 events in a study, but I can't see how we can do that when it's usually at least 7 days in between our events. 

This afternoon they had a Halloween Parade for the kids here.  They came around and gave all of the kids costumes and then lined them up for a parade around the two peds floors.  Owen couldn't leave the room because he is tethered to the monitors, but they have a long cord and we were able to wheel him out into the hallway so that he could watch the other kids.  It was the cutest thing ever!  And since Owen couldn't go and visit all of the stations that they had set up for trick-or-treating, one of the child life specialists brought back a bag for him. 

I really wished I could have taken pictures of some of the other adorable kids, but then you'd have to get permission to publish the pictures.  But I was able to get a few of Owen in the Buzz Lightyear costume that they brought for him:

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As you can see - he's in a really good mood.  In fact that really describes the situation since they have taken away all or most of his meds - he's so much happier!  It had been almost impossible to get a picture of Owen smiling in the last half a year, and today I had so many to choose from that I can't show them all (and get this update done before dinner!).  It has been a breath of fresh air to have such a Happy Owen.  He was waving to the other kids as they went by in their costumes and seemed to enjoy the break from his crib.  Now we go back to the waiting game...

Oh, and yes Sammy - we'll save some of the goodies we got for you!
 
EEG Study - The First Two Days

So on Monday we headed south to Duke for a prolonged EEG study since we've never been able to catch a seizure on EEG. I've explained the reasons why we needed to do this in previous posts, so I won't bore you with them again.

It took two months to get the appointment.  My parents drove 12 hours to come down and help us.  The techs in the Epilepsy Lab were warned repeatedly that Owen cannot be without liquids for very long, so if they are going NPO so that they could place the electrodes under sedation they had better be sure to be on time.  He dehydrates very quickly and then his system gets stressed and then we are at risk of seizure or having trouble waking up from the sedation needed to get the electrodes on.  And, of course, we waited and waited and waited while they couldn't get a nurse to sedate him and could't get the process started.  We didn't wait in the epilepsy lab where there were beds or anything.  We waited out in the main admissions area for Duke Hospitals.  So, when things started going downhill fast - as we told them it would - we were in the lobby.  Instead of being hooked to leads recording the event, we had to find a clear spot on the floor for Grandma to lay down her jacket so that I could administer the Diastat when he had the seizure. 

I'm fairly certain that everyone reading this blog probably heard me yelling nasty things at the lab people no matter which state or country you live in.  You see, Owen has never had a seizure closer than one week apart, so it is quite likely that their inability to plan ahead far enough to have a nurse available for an appointment planned two months in advance means that we all came here for nothing, or that we will be here for a very long time before he has a seizure.  Momma Bear was slightly miffed.  Miffed enough to call patient relations and file a complaint while we were sitting in the ER.

Rather amusingly if you have a medical emergency inside the hospital when you haven't been admitted, you still have to call 911 (or the nice lady at the admissions desk does) and then they have to admit you to the ER, even if you would not have even called EMS if you had been at home.  I feel very bad for the others in the waiting room as I had to rip off his diaper right there and then to administer the diastat - which is given "up the bung".  We don't have much time to spare as if we let his seizures get up a head of steam they get much more severe.  He started to desat (as usual) and I had to break out the oxygen tank right there on the floor next to the big fountain.  By the time we finally got admitted to the floor to get the leads hooked up it was after 6:00 pm and they didn't finish all their admissions stuff until 10:00 pm. 

So now we sit and wait.  They have taken away two thirds of his meds in an attempt to induce a seizure.  It has been a bit heartbreaking in a way - during the long span between the doses he becomes so much more normal in his behavior.  He isn't biting everyone who tries to touch him.  He isn't frantic.  And then they give him his one dose and suddenly you can't even flush an IV without someone sustaining damage.  Getting a glimpse of the more evenly behaved boy that I remember has made it much harder to stuff the meds in his mouth at lunchtime.

On a more amusing note, I have some pictures of Owen.  I think the hat that they put on to keep the EEG leads on makes him look like a teletubby - maybe LaaLaa when his head swirl is done up right, though I've just taken to calling him Po for the week. 

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The hat actually fits like a ski mask and since Owen is so used to wearing a hat all the time to keep his cochlear implant on, he doesn't seem to mind it.

He has also reached another one of those odd milestones.  For the first time he is able to climb up and stand in the crib at the hospital.  He likes to bang the big plastic dome that they have to keep kids from falling out.  I don't think his neighbors (they are all private rooms here, so at least there is a wall) probably enjoy it as much, but Owen sure has a good time.

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As my friend Amy pointed out, it looks kinda like a space ship - I think we'll call it the USS BubbleCrib!

So now we've settled in for the long haul.  We've brought every toy he owns, and he seems content enough for now, though he does look out the window and say "Out, out" a few times a day.  We can't leave at all because we might miss a seizure and he has to be tethered to the continuous monitor.  But we're making the best of it and we'll just see how long it takes to get a seizure.  It's a very weird thing to say but, "Hey Owie, hurry up and have a seizure please!"

 
Ears, Dogs, Meds & School
As you can probably tell from the title, I have a few subjects to update about :-)  Brace yourselves - I have a keyboard and I'm not afraid to use it! But there has been a lot of exciting stuff happening lately and I want to do each bit justice.

EARS - TWO YEARS WITH THE IMPLANT
The first is that two days ago was the second anniversary of the day Owen's cochlear implant was turned on.  Last year I did a really nice video for the "One Year of Sound".  I have not had enough time this year to make a video - but I did think that maybe I should spend a few words on the progress with the hearing.  Owen's receptive skills continue to be very good.  He can follow a very large number of simple commands like "stop that", "arms up" (for putting the tray up and down on the stroller or booster seat), "look at me", "take <whatever object>", "turn the page" and quite a few more. Really, he seems to understand the vast majority of what you are saying to him.  He seems to recognize which song you are singing to him and will put the correct signs (or as many signs as he's willing to do) with them. 

His expressive skills are somewhat further behind, but they do seem to be coming along.  He now uses the words "mama", "dada", "more", "hi" and "up" at the correct times and in a reproducible manner.  It may not seem like much, but if you had told me when we started the implant process that two years later he'd have 5 words I'd have been jumping up and down for joy.  And the good news is that all of these words have really come since he started speech with Ms. Jessie. Having consistent speech therapy twice a week since the end of last year has really made a difference, and so we are looking forward to more words coming in the near future.

I'm going to get a little ahead of myself by mentioning a dog here - I'll get to those details in a minute - to describe another leap Owen has made with his hearing.  Discerning spoken words in a room with background noise is not always easy for people with hearing aides or cochlear implants.   As such I think it makes Owen often seem anti-social because he doesn't always pick up on the fact that you are talking to him when there is a lot of other noise.  Tonight a woman came up to him in a room with moderate background noise and said "hi", and Owen looked right at her and said "hi" back.  There was another moment when a dog was being praised verbally with a "good boy" and Owen immediately clapped - just like we clap for him and say good boy in therapy.  To notice that someone was working with a dog in the room (Owen tends not to pay attention to what is happening elsewhere in a room) showing a very good social awareness and to be able to pick up the words "good boy" in a room full of people is a huge leap in his ability to listen.

Finally we'll cover the signing.  Owen signs rather better than he speaks at this point, but probably only because he's been doing it longer.  I'm sure I'll miss something here, but a quick list of signs that he has now would be:

Pear (his favorite food - will often use for fruit in general)
Cookie (his other favorite food - will often use for anything sweet)
Bar (for granola bar)
Want
More
Eat
Drink (uses milk for all drinks)
All Done
Up
Waves Hi and Bye
Fan (he really likes ceiling fans and has a sign to ask to turn it on)
Sleep
Yes (usually claps, but will sometimes use the sign)
No (nods head or signs no)

He will also put the signs together to make sentences.  Yesterday he made up his first real spontaneous sentence.  We have shown him "want more pear" and then waited for all three signs to give him the pears and he will evenutally mimic it and do it.  Yesterday though we were in the rather loud cafeteria and I just signed "want what?" in an offhand way to ask what he wanted next for food.  He very carefully signed "eat more pears".  I don't think I've ever shown him that combination, and I didn't prompt him with the signs first - he just answered on his own.  That's another big leap.  As with verbal words, Owen understands a great deal more signs than he uses himself.


SERVICE DOG
I haven't blogged about this because I wanted to get far enough along in the process that it was likely to be a reality before I got my hopes up enough to actually write it down.  We have an incredible local organization - Saint Francis Service Dogs that trains service dogs to help people with many different disabilities and health conditions.  A while back I had read somewhere that dogs can be trained to alert when a child is having a seizure - and that some dogs after, spending a fair amount of time with the child, can even learn to anticipate a seizure. 

I began to investigate this as a possibility for warning us if Owen has a seizure at night while we are sleeping or while we've stepped out of the room.  I found that this is actually not an uncommon thing for a service dog to be trained for.  Owen's PT actually knows a child with a St. Francis dog that can tell when the boy is about to have a seizure and alerts him to lay down so that he doesn't fall.  The idea of having a dog that could sleep with Owen and wake us if he has a seizure was just something we couldn't pass up.  I also liked the idea of a companion that could be there with him through scary procedures, and they can also help balance children learning to walk. 

So, back in late May or Early June we filed an application for a service dog for Owen.  It was a 29 page application and it felt like we were trying to adopt a child.  Of course it was probably 29 pages partly because I'm a bit wordy in my writing :-)  They need to know a lot of history and really dig into the lifestyle and medical issues so that they can know whether or not you would be a good candidate - and if you are which dog might suit you best.  Part of the application process is a home visit to make certain that you have a suitable environment - including a fenced in yard - for a dog. We had our home visit in June.

After you have applied and had your home visit your name and information is brought before the screening committee to determine if they feel that you would be a good candidate for a dog.  The screening committee then passes your name with or without a recommendation to the board of directors that makes the final decision on whether or not you will be accepted as a candidate.  At the end of July we received the good news that Owen had been accepted as a candidate. 

Before I describe the rest of the process I should state that a large part of the reason that the process is so lengthy and complicated is that Saint Francis is a non-profit organization and they provide the dogs free of charge - well, there is a $200 fee for the equipment that you receive like the crate, leash, vest, etc - but it is essentially free.  They have a limited number of dogs due to the volunteer nature of their organization and a huge number of applicants.  There are many places that will guarantee you a dog in a certain amount of time, but you have to pay the $14,000 - $20,000 that it costs to train the dog out of your own pocket, which is not an option for us.  Saint Francis takes their job of training their dogs and placing them with compatible partners very seriously and most of the process is to guarantee that the partnership will work for both the person and the dog -and to place limited resources where they can help the most.

So, tonight was our orientation and first training class.  While a service dog comes to you well trained, you have to have a fair amount of training as well to be able to work effectively with the dog.  You must learn all of the commands, you must learn your individual dog and you have to keep up the dog's training because just like children they will stray off of their good manners and hard work if you don't keep up your efforts.  So they explained the rest of the process in detail to us and even let us meet some of the dogs they have in training. 

At this point we will continue our training classes one night every other month.  In the meantime we are "eligible to be matched".  This means that if a trainer feels that they have a dog that would pair well with Owen we will be called in for an interview.  Each dog that is ready to be paired is interviewed with three or four people.  During the interview you meet the dog and the dog meets you.  You discuss the dog's strengths and weaknesses and compare them to your needs.  After the interviews are done, they decide which candidate best matches the dog.  If you aren't the one chosen then you go back into the pool. If you are then you begin the intensive training with the individual dog over the course of a few weeks.  Even after you finish your training and the dog comes home there is a probationary period to make sure that the pairing is compatibile. 

This is a long process, but I definitely think it will be worth it.  Tonight we met several of their trainers and they had all kinds of suggestions for other things that the dog could help with - such as retrieving meds or the pulse ox during a seizure, opening doors when I have him in the stroller and such.  Oh, and now you know why we were in a room with a dog that was being praised tonight :-)


MEDS
When I last wrote we had just been to the neurologist at Duke and we were all excited.  Well, it hasn't been quite as smooth as we had hoped.  When we got back the blood levels it turned out that his levels were low on the Trileptal and the Lamictal, even though he's on a pretty big dose of Trileptal.  The Zonegran was at least in therapeutic range, but the others were not.  Owen must just be one of those kids that metabolizes everything really quickly.  I called the doc the morning before we got the levels to let him know that Owen's outbursts of anger had gotten so bad that he was biting through to bleeding again and that we really needed some guidance on how to get wean something off as quickly as possible.  They called back and said to up the Lamictal (the one that has been making him so angry) and then we'd see about weaning later.  I growled a lot and told them that they needed to come up with a better answer.  This was at 5:00 on the Friday before Labor Day weekend so we knew that we were on our own until the following Tuesday.  \

On Sunday Owen woke up in the best mood we had experienced in ages.  All day long he was as happy as could be, until 5:47pm when he had a nasty seizure.  Boo!  But he woke up on Monday in a good mood again and so we decided that we would try increasing his dose.  Rather predictably his mood went right downhill.  One week later - yesterday - we upped the dose of Lamictal again to get to the final dose that the doc wanted.  Owen's day is a roller coaster of really good moods and really, really angry swings. The anger tends to pass fairly quickly, but it's very intense.  Today I called and told them that we were on the final dose that he wanted, and asked what the next step was.  The doc was out today, but his nurse called to verify all of his dosages and said that they would call us back tomorrow with a plan.


SCHOOL
And finally school. Things are going well at school and we're settling into a routine.  I really do think that having the background noise has helped Owen practice picking out individual voices.  He has also been babbling more and has been more interactive.  So I think the stimulation is doing some real good.  Owen is also quite fond of the playground. 

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And in this one I swear he's saying, "I can do it Mommy, I can climb this!"

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And I have no doubt that he will someday!
 
Status...

So, you may ask, just how is Owen these days?  Well as always there's good news and bad news.  And as always I'll save the good for last so that we can leave on a happy note.

The not so great news is that Owen's seizures continue. Every time he gets a virus we go through a seizure.  Well, you may think, a seizure every few weeks isn't so bad - and that would be true if they were quick little seizures.  Owen does not have quick little seizures, or at least he rarely does.  This was the scene on the side of the road on I-79 on our way home from the trip to Niagara described in my last post:

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I shoved aside all of our luggage and gear to make room to spread him out.  This is a scene that I would like to see a little less of, and so would Owen I'm sure.

We had been more or less pleased with our local neurologist until recently.  Due to economic considerations he has had to move from his 27 year old private practice to one in the hospital clinics.  Since then you can't get ahold of him, it takes days to hear back from him even with the nurse is uncertain about which meds he's really supposed to be on.  It's a bit nerve-wracking.  I believe that a very good and knowledgeable neurologist is being ruined by "the system".

We had been talking about getting a second opinion even before his neurologist moved - just because Owen's seizures are so severe and it seemed that it would just be silly not to ask around a bit.  Given the overall circumstances we decided to call down to Duke - where so much of Owen's care has taken place - to see one of their pediatric neurologists.  We were lucky enough to get in on a cancellation and went down the day before yesterday.

Just as I was packing up the car to head down on Sunday - our appointment was early Monday morning - Owen had a nice seizure to send us off with.  We ended up leaving a few hours later than planned.

I was pleased with our initial meeting.  The doc spent 45 minutes with us going over Owen's history and examining him.  He agreed that we are currently in a very bad place - so many meds on board that we are experiencing loads of nasty side effects, but also still having all the seizures.  You could put up with the side effects, or at least some of them, if it was stopping the seizures - but it hardly seems worth it when the seizures are staying about the same. 

Owen is currently on three different seizure meds - Zonegran, Trileptal and Lamictal.  He has three different sets of doses that are given at wakeup, 1:00pm and bedtime.  The combination swings him wildly between zombie and frantically happy throughout the day.  His motor skills have been heavily affected by the Lamictal.  He bites his own arm all the time - not to bleeding, but to bruising.  He is constantly in motion hitting (not to hurt, but just for movement) his head, his tray or something else all the time.  He is sleepy all morning and overactive in the evening. He has become less and less talkative. 

The Duke neurologist seemed to feel that all three meds work on the same channels in the brain and therefore their side-effects tend to be cumulative.  We need to get rid of at least some of them.  Owen has also never had the levels of any of his meds checked in his blood.  After reading other blogs where level checking seemed routine I asked our local guy why he didn't ever check levels.  His answer was philosophical and probably has some merit - that if you are still having seizures then you need more, and that if you are not having seizures then you have enough.  But the more I have read lately I see that children really seem to metabolize the meds at very different rates - some will take a lot of meds but process them so quickly that they aren't helpful by the end of the day, and others will take a bit and not process it at all and end up with sky-high levels.  So it seemed that you might at least want to get a baseline for what your kiddo does with the meds.

The Duke neurologist ordered bloodwork for Owen to be drawn before we left the hospital on Monday to see where we were at. Once we get the levels back later this week we will begin weaning off the Trileptal.  Depending on what the levels say, he may bring the Lamictal up because eventually he wants to end up with just the Lamictal and a new drug Depakote.  Apparently Lamictal and Depakote work well together.  This is going to be a long process and at the end of October Owen will be admitted to the hospital to the epilepsy lab.  There they will also take away the Zonegran and hope that he will have a seizure during a week of continuous monitoring.  Since Owen's only trigger appears to be viruses, it's hit or miss if he will have one or not, but hopefully removing another med will lower his threshold and being in a hospital brings up the odds on having a virus.

We want to catch a seizure in action for a number of reasons.  Beyond it just being helpful to see it on an EEG, we want to see where the seizure originates from.  There is a very small possibility that Owen might be a candidate for surgery to help control his seizures. With the extensive brain damage that Owen has, it is likely that a whole lotta things are mis-wired up there and that there isn't a single point which is causing the seizures.  If there is more than one "focal point" generating the seizure then surgery won't help.  However the fact that Owen's seizures always follow the same pattern and always affect the left side of his body only means that there is a reasonable chance that they are in fact always coming from the same spot.  If so then he might benefit from surgery to help control the seizures.

We also discussed the possibility of a Vagus Nerve Stimulator (VNS) which is a small device implanted just below the shoulder.  It acts sort of like a pacemaker for the brain and has been helpful for many people. 

We know that the odds of control with meds are very low at this point.   Once you have tried two different meds and failed to affect the seizures, the odds go down to something like 10% for each med you try thereafter being effective.  But, we are going to at least try the Depakote before we bring out the knife again. 

So, that's where we are now with the seizures.  Now, on to the good stuff!

Today was Owen's first day at his new preschool.  He had been going to the same Montessori school that his sister attends for the last two years.  He only went a few days a week and it was wonderful that he was able to have that interaction with the other kids.  We were very grateful that they welcomed him into their classroom.  This year, however, Owen was eligible for the Virginia preschool initiative in the public schools.  It wasn't an easy decision to leave an environment that we were comfortable with, but in the end we decided on the public school.  They have just built a brand new school right across the street from us and it is an incredible facility.  They also can offer lots of adaptive technology and have bent over backwards to make his classroom accessible.  He will have teachers with lots of experience in special ed working with him.  They have ordered a special tricycle to help him navigate the hallways, they have adapted swings on the playground, they have brought in a chair with sides from him to use while working.   We just couldn't turn down that opportunity for him.

Today was his first day and he had a great time.  He's still a bit shaky from his last seizure - and a bit icky from the cold that brought on the seizure, but he still played with toys and enjoyed the swings.  I think it's going to be really good for him.  Owen qualifies for a one-on-one aide.  The aide that had been with him for a year and a half quit before school started and we were scrambling a bit for a while there, but it has worked out allright.  I was originally going to be a substitute special-ed aide this year - just to get me out of the house a bit.  So, instead of being a sub they just promoted me to full time aide and for at least the next few months I'm going to be Owen's aide.  There will be other aides that will be shadowing me throughout the year and if Owen's seizures calm down we might transition him to someone else and I'll take on another kiddo in the same school, but that's a long way off given where we are right now. So I get the job I wanted and Owen gets to go to school.  Everyone wins!

Allright, that's a lot of verbage, time for a picture!

Here is a blurry, useless picture that I took of Owen at school today:

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He wouldn't sit still long enough for me to get a picture with my phone.  The phone requires the subject to be absolutely still if you are inside, and Owen is rarely absolutely still unless he's asleep. But you can see the really colorful rug that they have in the classroom that he loves to crawl on.

I also put together a little video of why it is that we can't get a still picture of Owen anymore.  Just ignore Mommy's commentary - I didn't have time to find a soundtrack - and enjoy watching him climb around:



I will close with a picture of Owen and his sister hanging out in their favorite rocking chair:

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We're Still Around
So, it has been just one day short of a month since my last update and just a few things have happened :-)

On April 19th we headed down to Durham for a whole round of appointments.  The first was more for fun.  We got to see Dr. Kurtzberg and she gave us a tour of the stem cell facility.  This was incredibly cool and I really wish I could share lots of pictures, but alas while my camera was with me, my memory card was not.  So the best I could do was a couple of not-so-great pictures with my phone.  This is one of the storage tanks for the cells:

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These freezers contain liquid nitrogen that keep the cells frozen.  There are quite a few of these freezers, but if you have cells stored at Duke, maybe your kiddo's cells are stored in this one!

We got the full tour and got to see the machines that separate the cells from the rest of the blood, the ones that count the cells, the ones that inspect the cells and all kinds of other things.  This was incredibly interesting and honestly the next time I'll bring my camera and my memory card so that I can share it with you.

We spent the night in Durham and then headed out first thing in the morning for the audiologist.  That went really well.  Owen was in a good mood and they were actually able to do some real testing for the first time in a long time.  They found that he is still responding to voice down to 10 dB, which is great.  However they found that he was responding to low tones much better than the higher tones, so they gave him a new mapping with the higher ranges boosted by a bit.  We have actually seen a noticeable difference in the noises that he makes.  He has definitely added a number of new high pitched sounds to his repertoire since then.

We had a few hours between that appointment and the one with his neurosurgeon that afternoon.  To pass the time we headed down the street to a mall where they have an indoor toddler playground.  Everything there is sized for toddlers, and the floor is made from thick foam.  Again, my camera wasn't in working order so I had to take pictures with my phone.  If you are taking pictures indoors then your subject has to remain perfectly still in order to prevent blurring.  Owen is never still, so the pictures are always blurred.

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Owen was particularly keen on a fun-house mirror that they had on a wall:

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It's a great place to let him get out and crawl for a while instead of just sitting in the stroller all day.  Eventually the fun had to end and it was off to Duke for the neurosurgeon.  This was just a checkup, and we didn't need a CT scan this time.  The purpose was mostly to let the neurosurgeon see all of the great progress that Owen has made.  Unfortunately they were running really far behind and by the time Dr. Grant came in Owen was fast asleep.  But we did discuss what is next for Owen. 

Owen has a Chiari malformation, which means that his cerebellum has been pushed down through the base of his skull by a bit.  This hasn't ever caused any problem with his spine in the past, because his huge head gave lots of room to keep the pressure on the cerebellum low.  When we made his head smaller in the fall, we also increased the chances that the Chiari might cause problems with the spine.  If the cerebellum starts putting too much pressure on the spine you can get something called a syrinx - which is kind of like hydrocephalus of the spine.  With a syrinx the CSF builds up in pockets in the spine and can cause all kinds of problems including problems moving ones legs, problems with swallowing and other issues.  We knew about this risk when we did the cranial vault reduction, but they felt that the risk would be small given that Owen's head would still be fairly large.

A small risk is still a risk though, so we need to monitor the cerebellum and spine.  The problem is that in order to monitor this situation you need an MRI.  MRI's and cochlear implants do not play well together.  In the USA the magnet must be removed from a Nucleus Freedom implant to have an MRI.  In other countries it does not.  Why this difference?  FDA approval.  Same device, but different protocols in different countries.  The removal of the magnet is, in theory, a fairly simple thing.  You make a little incision, remove the magnet, slap a band-aid on it, get your MRI, put the magnet back in and go on your merry way.  The reality is that this is two sessions in the OR to be coordinated with an MRI which turns out to be next to impossible to arrange.  We were several weeks into attempting to get this scheduled when our implant surgeon found out that there has been quite a bit of testing in the US on MRI's with the magnet in place.  They have found that it can be done quite safely with the magnet immobilized using hearing aid molding material.  We are in the process of getting all parties on board to attempt this - with all of the waivers signed for a non FDA approved procedure.  A CT will not show a syrinx, removing the magnet risks infection to the implant and shunt, this new procedure is the least risk and hopefully we can get it all arranged. 

Seizures
Yeah, we still have 'em.  In addition to the one on April 15th from my last post, he had one on April 29th which did cause some breathing issues, but they weren't severe enough for him to go to the hospital.  That one was associated with a nasty stomach virus.  And he had another one today.  We were having an absolutely wonderful playdate with Owen's friend Mya.  We had just come inside for some lunch when he seemed to be having trouble sitting up all of a sudden.  He went from woozy to just plain wilted and then he couldn't sit up at all.  His eyes were open but nobody was home.  Then he started to shake in one arm.  We got out the Diastat.  Just after I gave him the first dose he threw up a bit but the shaking stopped almost immediately and then he just went to sleep.  He never had any trouble breathing.  So, this one was not nearly as severe as most of them because it resolved itself with just one dose of Diastat and he never had breathing issues.  He woke up after about an hour with a bit of a headache, but otherwise just fine.  Big thanks go out to Mya's awesome Mommy for her cool head and help during the seizure, and to her Daddy for taking Mya so that her Mommy could help me.  Big thanks also for being understanding about Mya's wedge which unfortunately caught Owen's lunch.  I thought I'd get the bad news overwith so that I could post the fun that the kids had today.

Today Mya and Owen had a good time playing with Mya's musical instruments:

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And Mya was kind enough to share her old tricycle with Owen so that they could ride together.  These bikes have been adapted nicely and Owen just had a blast.  Their feet are strapped to the pedals so that they get the motion of pedaling, but you can steer and push with the handles on the back. 

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It was a really fun visit - even with the seizure.  Once we got home though he was back to his normal self.   It was a nice day so we had a fire and cooked outdoors.  Here is Owen being his happy little self:

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A Milestone of Sorts
We are home now, and I thank everyone for their well wishes. Owen is up in his own bed asleep now. 

This was a pretty standard seizure for Owen with the whole range of vomiting, then shaking, 2 doses of Diastat and then trouble breathing.  The bummer this time that landed us in the hospital instead of waiting it out at home was that he aspirated a bit whilst he was reliving his dinner.  They were afraid this might cause an infection in his lungs and so gave him an antiobiotic by IV while he was still unconcious and couldn't take it by mouth. Nothing had materialized by this afternoon though and he had cleared his lungs pretty well by coughing so they sent us home.

The seizure started at 7:18 last night. This was Owen at 9:30 when he was finally breathing on his own so I felt I could take a picture with my phone. He is still quite unconcious and a long ways from waking up, but resting comfortably:

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I finally got to lay down to rest at about 2:30 am.  This is Owen at 3:30am looking for food:

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Huge kudos go out to Miss Tessa today for not only taking care of Sammy while Owen was in the hospital, but also cleaning my house, feeding the dog and doing the laundry while I was gone.  Daddy was busy helping his Daddy who is also in the hospital and so Tessa gave us all a hand.  She gets a whole sky full of gold stars for the day!

And now onto our "milestone".  We have spent quite a rather lot of time in the hospital with Owen and during that time I have watched other kids being wheeled around the floor in red wagons, which they seemed to enjoy doing. For all of our previous stays Owen has either been too sick to be allowed out of the room, or even if he was well enough he couldn't sit up well enough to ride in a wagon anyway.  Well, today Owen was essentially fine for most of the day, they were just watching him to be sure he was OK.  And he is also now quite capable of riding around in a red wagon.  So, instead of spending a long day trying to keep an active child happy in crib, we went exploring instead in our little red wagon:

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He doesn't look that happy in the picture, but those of you who know Owen will recognize that he is making his sign for cookie.  Mommy had a bag of animal crackers in her hand and he felt that I should be focusing more on giving him animal crackers than on taking the picture.  Why do I have animal crackers?  Because they delivered french toast for breakfast and cheese pizza for lunch.  Owen is allergic to eggs and milk, so we opted for some these instead.  So, maybe it's not a dream come true, but it was nice for him to be able to get out of the room and roam around today - it made the time waiting for discharge go by much more quickly.
 
We`re Outta Here!
Owen is feeling much better. We are headed home.
 
Why? Because Hospitals Are Fun
Owen missed the hospital food so much that he decided to have a seizure last night. He aspirated a bit with this one so we have to stay til this afternoon to make sure his lungs are OK. He is awake and alert this morning though so we are hopeful that we`ll be able to go home this afternoon.
 
By Leaps and Bounds

So, when last I wrote Owen was trying out some new seizure meds.  Things have been going pretty well with them - no seizures and he has adjusted well to them, but a few days ago Owen started being really irritable and biting people again - it was reminiscent of the Keppra days.  Yesterday he had his seizure follow-up visit with his neurologist and we discussed the new behavior.  At that time we had been taking Owen's daytime dose of Trileptal and Zonegran and splitting them in half - giving a quarter dose in the morning, a quarter dose at lunchtime and then the last half at bedtime. The label says give him 1/2 of each in the morning and 1/2 at bedtime, but he just couldn't function during the daytime that way. Owen's behavior was definitely the worst in the morning, getting better throughout the day.  So, Dr. Wilson suggested eliminating the quarter dose of Trileptal first thing in the morning as it makes Owen tired and it might be making him cranky to get something that makes him tired right after waking up.  We tried it today and it was the best day we've had in ages.  I don't know if it was just a coincidence, but I'll take days like this anytime for any reason:



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Owen has been making incredible progress in his physical abilities in the last few weeks - and in his intellectual ones too.  I've put together a video of some of his latest accomplishments.  Owen has never really gotten the hang of tool usage -  he just eats all objects that he is given and never attempts to use them for any specific purpose.  One of the places that we have started in OT with this concept is to get him to bang a drum with a stick.  We have been working on this forever.  It's a bit hard to see in the little video that I can upload to the web, but in the first bit he is happily banging on a little drum with a stick. 

From the drum we move onto his new ability to CRUISE!!!  He can take steps sideways while holding onto things.  He starts out holding onto the gates where his toys are tied up and makes his way to more toys on the couch - all under his own power.  This is just so cool (Yes, Mommy is bouncing)!    After that is just a bit of him practicing standing up from a kneel - this one is for Ms. Nacol his PT, just to prove that he really did it :-)   Next, he shows how he can crawl from the floor up to toys on the couch using his stairs. It's not graceful, but it is effective.  Finally, you can see him working on his walking - he's taking steps with just holding onto one of Tessa's hands. 

Enough verbage...here's the small version video for low bandwidth (less than cable modem):

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And here it is in DVD quality for grandparents who are willing to wait for it, or those lucky people with cable modems or better:

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Not bad progress at all!
 
All is Well
I thought I'd do a quick update tonight now that things have started to settle down.  Owen is mostly back to normal - he can sit up on his own again and he can stand up holding onto things again.  He still seems a bit more wobbly than he used to be, but he's way better than he was last week.  And some of that may be that he enjoyed not having any work expected of him last week and now it's back to therapy and people making him sit up and walk all the time :-) 

For my own record keeping purposes, it was really Saturday (seizure was on Monday) before he really started to act like himself again.  He was happy at story time that night and he stopped being 100% clingy and was able to crawl off and play with his own toys again. 

We still continue to struggle a bit with the Trileptal making him tired in the mornings.  We haven't tried to send him back to school because even though he has stopped falling asleep right after we give it to him, he's still sleepy enough to be clingy and a bit on the cranky side.  We're hoping that eventually evens out with the Zonegran that makes him all wired and zippy.

Overall though he's pretty much back to his normal self.  I measured him recently and he's grown almost two inches in length since his surgery in November!  He is three years old, but he was still in 12 month pants because his legs were so short and he had a normal 3T upper body.  Now though he is soldly into 18 month pants and he's even on the CDC growth chart finally!  He has also gained a lot of weight. He's just one ounce shy of 33 pounds and it's all muscle mass. Since his Mommy only weighs 105 pounds, he needs to start walking soon because he's getting to be a big boy to carry around!

I took some pictures of him today sitting at his big boy desk for snack.  No straps and no molded seat and he did great!  This was his sister's desk when she was little and now Owen has inherited it. 

Owen was eating pretzels and having some white grape juice:

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In this one he looks like he's signing, "Mommy, come here..."

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But mostly he is just a happy boy - especially when he's eating!

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Our happy boy is back, and so we're happy too!

 
Seizures 101
I have gotten a lot of questions lately like "Why did Owen go so long without seizures and suddenly start them?", "Is there anything I can do to prevent them in my child?", "Why don't you take him to another doctor that might be able to stop the seizures since this one obviously can't?"   I have been meaning to add a seizure page to the website forever, but I haven't had the time.  So I thought I'd do a quick blog entry to cover the big items rather than responding to each email individually. 

So, we all know that children with hydrocephalus are prone to seizures - that is hammered into our head from day 1 by all of our doctors.  The question is, "why, and why don't they always show up right away?"  I've heard a number of explanations from a number of different sources, but this is how I think of it in my mind:

Picture a scenario in which you are asked to light up a large room.  You are handed a brand new spool of wire and 50 light bulbs.  You merrily go along connecting the wire to power and then hooking up each light as you string them around the room.  The room is beautifully lit when you are done and the task is accomplished with relative ease.  Now picture a situation where you are asked to light up the same room, but are instead handed a big box full of a nest of old wire.  The insulation is cracked in places and the wires are all tangled up and you can't straighten them out.  You go about hooking up the first light, it's not too difficult to get a wire that works all the way to the light.  Now you hook up a second and a third.  Not too bad.  By the time your get to the tenth light, it only comes on dimly and the second light now seems to be dim too.  The cracked insulation has allowed the wires to cross and you have a power drain.  Bummer, unhook the tenth light and try again.  By the time you hit the twentieth light things are dimming and shorts are causing lights to pop.  Each light becomes more and more difficult to get going without things going haywire.  You do finally get to 50 lights, but any sudden movement or disruption could cause the whole thing to malfunction.

So you get the idea.  On the left is a CT of a normal brain, on the right is a CT of Owen's brain (the shiny thing is his shunt).

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The wiring in a brain that has been damaged by hydrocephalus is going to be a bit different.  When the children are very small and there are only so many neural pathways present, it is easier for the brain to map those functions without causing any problems.  As they get older and there are more pathways, it can be harder for it to find ways around the damage.  This is why our neurologist has warned us that during times when Owen is learning things at a more rapid pace, we need to be more watchful of a seizure.  This is also why so many people outgrow seizures as there isn't such a rapid creation of pathways when we get older.

There is a second reason why you don't always see the seizures in younger children, and that is because they are harder to spot.  A grand mal (now known as a generalized tonic-clonic) seizure in an adult can be strong enough for them to knock stuff of tables, fall off a bed and do serious damage.  In an infant they just shake a bit all over.  Why the difference?  Muscles!  Young children do not have the strength in their muscles to produce the big movements that they can later.  But you still tend to notice these types of seizures, even in infants because it is a movement that they wouldn't normally make.  But there is another issue - not all seizures involve body convulsions.  In Owen's case he rarely has convulsions, though they do sometimes occur.  For him, he usually just vomits and then passes out.  This is something that any child could do as young children often sleep after vomiting.  It wasn't until they became more severe and he actually started losing the ability to breathe that we could say 100% that these were seizures, and these days he often has convulsions with them.  So in reality he was probably having them for some time, we just didn't realize it.  Seizures can take so many forms that it's very difficult sometimes to pinpoint whether or not a seizure has occured unless you catch it on an EEG.

So that takes care of the why in general and the why not until they are older.  Now for the can I do anything to prevent them from starting?  No, you can't (please keep reading to see the whole explanation, even if you disagree with the statement because it is more complicated than that).  You cannot fix the wiring in their brain when it has been damaged like it may be from hydrocephalus.  But, you say, there are diets that can help people with seizures!  And yes, there are.  The ketogenic diet can help many people with otherwise uncontrollable seizures, and there are other diets as well.  But the thing of it is, these diets work in much the same way as the anti-convulsant medications do - they alter the body chemistry in such a way that the messages that are fired between the neurons in the brain are affected.  But do they prevent your child from having epilepsy?  No.  In the same way that having a cochlear implant does not prevent my Owen from being deaf - if you take off the implant he still can't hear - the drugs or the diets only prevent the seizures as long as they are affecting the chemistry of the body.  Sometimes you get lucky and the diets or meds will "teach" the body the right way to go about things and the chemistry will stay the same once they are removed, but it is just as likely that removing them will cause the seizures to reappear.  The body may also reach a point where the nest of wiring is stable enough that it can light all 50 lights without needing outside maintenance and then you may be able to go off the meds or diet. 

This all helps to explain why seizures are often so much more difficult to fight in children with hydrocephalus than they are in the general population.  A person with normal anatomy may have seizures because of a chemical inbalance - find the way to restore the balance and walla, you control the seizures.  A person with normal anatomy could have seizures for any number of reasons, but finding the seizure med that lets the neurons communicate normally will likely take care of the whole problem.  But when the wiring is all messed up it's a matter of having so many different issues.  Find the answer to one seizure type and suddenly something else appears because another wire crossed somewhere else. 

And finally, why don't we switch doctors since the seizures haven't stopped?  Well, the brain is an immensely complicated thing that we honestly barely understand.  Fighting seizures is an art form, not a science.  Our neurologist is a very good one.  He was slow to prescribe medication when others have wished to force it on us even when Owen wasn't having seizures, he has prescribed vitamins instead of meds in the past because he knows those work too in some circumstances.  He has taken a very thoughtful, methodical approach to Owen's seizures.  The truth of the matter is, that seizures cannot be easily controled and that the best doctor is still making their best guess as to where to go next.  Obviously if they continue and we feel that his current doctor is out of answers we will seek other opinions, but at the moment we are confident that what can be done is being done.

I hope that this has helped a few people - either those new to seizures or maybe family members of those with seizures to understand a bit about how this all works.  And for those parents that might be feeling guilty that their child is having seizures because they didn't feed their child the right things, I give you my permission to leave your guilt at the door. 
 
Seizure Meds Suck
So, at the hospital they told me that we should discontinue the Trileptal and start the Zonisamide (generic for Zonegran).  I asked a few times, of a few different people and they all told me the same thing.  But I was still skeptical, you don't generally stop one seizure med cold, you wean them off slowly and slowly bring another one on board.  So, not wanting to take any chances I stopped the Trileptal in case there was some kind of possible interaction that they were worried about - but I also put in a call to the neurologist just to cover all the bases.  The seizure was on Monday.  I didn't hear back from the neurologist on Tuesday, which was unusual because they are usually very good about getting back to us.  And I figured that because I had specifically said that I had discontinued the Trileptal in the message, that they would be quick to call back if that was a problem. 

Not so.  They finally called us back this morning (Wednesday) at 10:25 am and said that no, we should NOT discontinue the Trileptal, that Dr. Wilson had intended him to take BOTH medicines in combination.  The nurse seemed shocked that I had stopped the Trileptal.  I will not go against my instincts again. 

So, the Trileptal has made Owen very sleepy during his time on it.  So much so that we have stayed up to 10:30 every night to give it to him so that he could take it at 11:30 during the day and not fall asleep during school or therapy. We'd have just enough time to get lunch into him before he'd clock out.  The Zonisamide did the exact opposite - he's been wide awake, unable to take his nap or go to sleep until late, and just wound up like a top all day.  He just couldn't calm down.  Today with both meds on board he seemed confused - not sure if he should be tired or wired.  Hopefully that will settle down over the next few days.

Owen is still rather wobbly - he has a bit of difficulty in coordinating grabbing for objects that he wants and can't balance enough to stand up or sit for very long.  It's hard to know how much is because of the meds and how much is because it always takes a few days after a big seizure to find his equilibrium.  He is happy enough though, and he's enjoying all the extra snuggle time that he's getting.  We'll just see over the next few days how things settle out.  In the meantime he is still quite capable of crawling over to his toy baskets and emptying them all over the living room room a few times a day and eating more than his sister at a meal so he's doing all right.
 
Seizures Suck

I want a T-shirt with that printed on the front.  So, only about a half an hour after Owen's aide Tessa said, "The trileptal really seems to be working - he's even been sick and no seizures." - he had a very nasty seizure.  I mean, she even knocked on wood afterwards! 

And yes, this has a happy ending.

This was the worst one since last summer when he started the seizure meds - he did the whole array this time: first he vomited (always the way Owen's seizures start) then he got the whole body shakes, and then he lost conciousness and the ability to breathe more than once every 20 - 30 seconds or so.  So we got out the oxygen and the Diastat.  The second dose of Diastat was able to stop the convulsing, but didn't bring back his breathing so we headed for the ER.  We live out in the middle of nowhere and so we only have a volunteer rescue squad. These are incredibly dedicated people who care very much - but they can only come so quickly and if they are on another call or there is bad weather it can take quite a while for them to come.  It was snowing like crazy and our driveway only has a small path down the two feet of snow that have fallen - so we opted to head for the ER ourselves.  We did call 911 and tried to get them to meet us with an ambulance, but that appears to be impossible in our county.  Just a few minutes before arriving at the hospital he started breathing on his own again - it was like a lightswitch turning on: one second he wasn't breathing and his O2 was 83% with oxygen and mouth to mouth, and the next he's breathing fine at 100%.

We found out a few things with this incident.  First, oxygen tanks are great to help out, but when they stop inhaling it doesn't do much good.  Tessa wins the gold star of the year award for doing mouth to mouth for a half an hour straight on the way to the hospital.  Mommy was driving - Tessa comes recently from North Dakota and doesn't live in the area where we were going to the hospital so it seemed better for me to drive and get us there as quick as we could - Tessa, of course, is CPR and first aid certifed and now she can add having actually done it to her resume. 

So, realizing that the oxygen tank wasn't enough - I requested that we come home from the hospital with an Ambu Bag.  Mouth to mouth is effective, but it is difficult to keep it up for very long and it is second hand air so the oxygen content isn't very high.  We had the oxygen cannula still on Owen while she was doing the mouth-to-mouth.  Ambu Bags can use either room air or you can hook oxygen to them and you won't pass out while administering it.  A not-so-nice charge nurse at the ER stated that no parent should ever have such a thing and that only an EMT should be allowed to use it.  Fine, I'll just hire one to live next door to us, or I'll take the EMT training and hope that in the next however many months that takes (I checked, the next course locally isn't until the summer and it's 120 hours of training) that he doesn't have another seizure.  They also said that legally they could not give us an Ambu Bag because it is a restricted medical device.  She also gave us a dressing down for not using an ambulance - clearly ignoring the fact that one couldn't actually get one to us.  After much yelling and nastiness, we left without an Ambu Bag. 

Now given how much of a stink they put up at the hospital, I figured the only way we would get one would be through a "Don't Ask, Don't Tell" site on eBay.  As it turns out you can order one on Amazon.com for $20.  Anyone can, no prescription, no big expense, just $20 from a reputable online company.  And if you'd like the training on how to use it (you can actually pop a lung if you aren't careful) you can just call your local Red Cross.  I did and for $80 anyone can come in off the street and get the full CPR, First Aid, AED and Ambu Bag training.  I already have the CPR and First Aid, but I let my certification lapse due to the fact that I use it so often that I haven't forgotten what I learned the 5 times I took the course previously.  No need to be an EMT or paramedic, you just go sign up.  I'm going next weekend on Saturday and taking the course. 

So, here is a blurry picture of Owen at the hospital yesterday when he finally woke up after the Diastat wore off:

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We came home after just a few hours.  They didn't really have to do anything for him this time as he didn't need to be intubated - but when you live this far away and they aren't breathing, waiting until you know 100% that they will not need the breathing tube means you have waited too long for the breathing tube to help them. 

The neurologist has changed his seizure med again - we're on Zonisamide now.  Let's all hope and pray that this one does the trick. 

Most days I say to myself wow, I'm really glad we don't have to deal with x, y or z medical condition as I read or hear about something new.  I often say things like, "It would really suck if Owen had to deal with ...".  But on days like yesterday I think - Our situation sucks quite enough Thank you! But we are still Thankful that once again we brought home our little boy intact and well so you won't hear me complaining - or at least not very loudly :-)

 
Go Baby Go!!
Wow, what an amazing few weeks it has been! My apologies for being rather out of touch with the blog community for the last few weeks - I got a new computer for Christmas and it has been a painful upgrade, leaving me in limbo between the two.  But I think we have that mostly solved now and I should be able to join the world again.

But what has really been amazing has been Owen's progress.  Firstly, since stopping the Keppra his mood has just been incredibly good.  You don't realize how rough things have gotten until they suddenly get better and it's like the sun coming out.  The trileptal has been a much better drug for Owen.  The only negative side-effect so far is that it makes him very sleepy right after he takes it. For a while he was falling asleep during therapy and at school, but we've been tweaking the times at which we give it and the dosage and I think we've worked out a schedule that lets him do just about everything he needs to do. 

On January 5th Owen went in for his last cord blood infusion.  We decided to use the last set of cells because this is such a huge time of learning for Owen now that he can move his head.  It was a fairly long day.  You see Owen didn't want to have an IV put in him and he felt very strongly about it.  But Dr. Kurtzberg worked her usual magic and after a couple of hours, with 4 people holding him down and on the 4th attempt, we finally managed to get the cells in:

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After his last infusion it was much easier to tell if he was making more progress because he had completely stagnated for so long.  When he suddenly started signing we knew that things had improved.  This time we are in a period of incredible changes, so it will be much harder to tell.  However, he did finally hit a milestone that we have been trying very hard to meet for three years.  And here it is, Owen has learned how to clap!:

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It may not seem like a big milestone, but we've tried soooo hard to teach him and he finally got it, so we're very happy!

He's just doing something new every day.  Owen has never been able to get that big head off the floor enough to even hope to sit up on his own.  But after his surgery his head control has gotten better every day, and now he can finally do it - he can get himself up off the floor and into a sitting position all by himself!

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And Oh the Places He Can Go!! (With all respect and love to the great Dr. Seuss)  I've saved the best for last.  Before Owen's surgery Owen had managed to take a shaky step or two on the parallel bars that his Uncle Richard gave him, but it always required a rather great deal of support for his torso from someone else and he always fell over after just a few seconds even with support.  That last video I put up of him last October (which you can see here)  which showed him taking a few steps was one video of about 20 that I took that day where he couldn't do it at all, and in the split second before and after that video he had fallen over.  But now.....check out this video where no one is supporting him at all!

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So, it has been a wonderful month.  We have our happy boy back and we are just giggling with all the progress he is making!
 
Merry Christmas and Goodbye Keppra
Firstly Owen enjoyed a lovely Christmas with our family up in New York.  For those kind souls that have asked about my father-in-law, we had a wonderful Christmas present in that he was able to come home the week before Christmas.  He has made a tremendous amount of progress since his stroke.  He is able to walk on his own, feed himself and to speak clearly when he concentrates. As such he was able to join us for our Christmas dinner.  For info on Owen's Christmas and to see my father-in-law at dinner you can check out our family blog here.

Secondly there is the Keppra issue.  In past posts I talked about the rage that it seemed to be causing in Owen.  The neurologist had suggested giving Owen vitamin B6 to help with this.  At first it did seem to help.  In the previous two months I couldn't really point to a day where we could say that Owen was in a good mood for more than a few minutes at a time.  After starting the B6 Owen's mood definitely improved.  We would get two or three days in a row where he was in a fabulous mood and back to his old self. 

The problem was that we would then experience a day that was worse than any we had ever had before.  At one point he was so upset that he bit his arm until it was covered in bruises.  Trying to restrain him only bruised him more - Owen is incredibly strong. His face and legs were scratched from his thrashing around. In the end we gave him a dose of Benedryl to knock him out and called the neurologist.  We decided that even though we were having more good days, the bad ones were just getting too dangerous.  The neurologist changed Owen's medication to Trileptal.  Unfortunately you can't just change seizure meds overnight.  We had to wean him off the Keppra first while we slowly brought the Trileptal on board.  But as the levels of Keppra decreased in Owen's system, his good mood noticeably increased.  Owen has been Keppra free for several days now and it has been wonderful.  My happy boy is back.  Today was the first day on the full dose of Trileptal and so far the only side-effect that we have noticed is that he is tired right after he takes it.  His system should adjust to the Trileptal in the next few days and the tiredness should go away.  Owen's tummy has also settled down on the Trileptal - I think the Keppra must have been causing some of the extreme constipation that we were seeing as well.

And finally I will leave you with some videos showing Owen's progress.  Owen now spends almost no time in his walker - it has been parked downstairs for weeks. He wants to move himself and even though the walker can get him much farther much faster, he will fuss in it and want down to crawl on his own.  We have one very determined little man.  He can now crawl up his therapy stairs all on his own.  If he has a wedge or a stair to use to get him started he can sit up on his own.  I think he is extremely close to being able to push up from the floor all by himself. 

So here is Owen taking a few steps with Miss Tessa just holding his hands.  I posted a similar video a few months ago, but it was very short because he only took about two steps and then fell over.  He can now do this all the way across the room and into the next room and so on...

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And here is another video that might not seem all that amazing at first glance, but it almost brought tears to my eyes when Owen started doing it.  For Christmas Santa brought Owen a little wooden noise maker with a frog on it.  It's just two round pieces of wood with a string that holds the two pieces together.  The two pieces close together like a clam shell and make a noise.  I have written before about Owen's lack of tool usage.  He has had a similar toy for years and I've never been able to get him to do more than chew on it or stare at it.  At Christmas though, he figured it out almost immediately:

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So, Owen's Christmas present was a muscial toy, and Mommy's Christmas present was seeing him actually use it!
 
And the Answer Is: B6
We had our appointment with the neurologist today to discuss the rather unpleasant side-effects that we are experiencing with the Keppra.  He suggested starting Owen on a supplement of Vitamin B6 - at about 25 times the dosage in a normal multivitamin.  He says that this helps many children who experience the "Keppra Rage".   He almost seemed apologetic about not changing his meds, but he believes that Keppra is the right drug for Owen and that the B6 has an excellent chance of working.  I am personally a big believer in homeopathic solutions - or at least I believe that there should be a balance between understanding that many homeopathic methods have merit, and also knowing when a drug is necessary.  I told him this and he seemed happier. 

Dr. Wilson said that we should see results within the week.  If we do not then we should double the dose from 25 mg to 50 mg.  If we don't see a change by then, he will change us to a different medication.  Let's just hope and pray that this is the answer as the Keppra has shown a number of benefits for Owen, including much less severe seizures and it appears to help him cognitively too.

So I am off to find some B6 in a form that Owen can take - as in not in big pill format.  If the normal stores don't have it, Anne Kay's Natural Foods will have it in drop form, just at 5 times the cost of it at Walmart. 
 
Aw Poo!
Nope, it's not the poo.  Just a quick update...it's not the tummy tract that has been making Owen miserable for the last month and a half.  The GI doc looked at his x-rays today and said that the insides are clean. We've now checked the shunt, cochlear implant and intestines - that only leaves one thing: his seizure meds. 

Recently I found more information about the possible side effects of Keppra.  When you look at the initial list from the drug websites they say "possible mood changes".  When you check the newsgroups however you start to read about something affectionately called "Keppra Rage".  For the last month and a half - since before Owen's surgery, Owen's mood has not been great.  We get a few good hours here and there, but for the most part he has been really cranky.  It progressed from just a bad mood to actually biting his hands, other people's hands, scratching himself and generally showing Hulk-like anger.  We assumed that this was from tummy pain, because that is what has always caused his bad moods in the past. He can't tell us what is wrong, so we have to guess.  And that is also why we've tested every bit of hardware on his body and x-rayed his tummy. 

I started asking other parents and other docs about Keppra and they all agree that in some people it really causes uncontrollable fits of anger.  We have an appointment with the neurologist on Friday to discuss other possibilities for seizure control medications.  I want my happy boy back!
 
Downs and Ups

It has been a couple of weeks since my last update and a lot has happened both awesomely great and not so great. 

As always, we'll get the not so great parts out of the way first so that we can end bragging on all the progress he has made.  After three seizure-free months Owen finally had another one last week.  Owen has only ever had one of the TV-Classic, previously known as Grand Mal and more modernly relabeled tonic-clonic, shake and jerk all over the body seizures.  Instead Owen usually follows a pattern of vomiting, choking and then losing conciousness for a few hours.  In the past, before the Keppra, Diastat and home oxygen, Owen would also lose his ability to regulate his breathing right after he threw up - which would land us in the ER with a breathing tube.  The Keppra is an anti-seizure med that he takes twice a day that is supposed to prevent the seizure from happening.  The Diastat is an emergency anti-seizure med that you give after a seizure starts. 

So, last Tuesday (December 1st for my record keeping) he was coming home from school and Tessa heard him choking in the car seat.  She pulled over and hit him on the back to clear his airway and he started breathing again just fine, but he then lost conciousness.  She was only about a mile from the house so she brought him here and we hooked him up to the pulse-ox. (BIG Kudos to Tessa for quick thinking) His oxygen was fine, but he wouldn't wake up for anything so we gave him the Diastat.  Now the general idea with the Diastat is that you give it to him if a seizure lasts more than 5 minutes, then wait five more minutes and administer it again if he is still seizing.  The problem is that Diastat puts him to sleep, and so does the seizure so I'm not sure how you're supposed to know if you should give him the second dose.  However after the first dose his reflexes were more responsive so we didn't give him the second one. 

He was being monitored on the pulse-ox the whole time and his vitals were perfectly stable so we just called the neurologist's office instead of 911 (per the neurologist's instructions).  He said that it's normal after this type of seizure to sleep 2 to 3 hours and to call him back if he didn't wake up in that amount of time.  After two and a half hours he woke up and started signing for food as if nothing had happened.  The neurologist upped the Keppra dose to 2 ml twice a day from 1 ml twice a day. 

Which brings us to problem #2 - Owen's GI tract.  There have been many discussions of poo on this blog and I suspect there will be many more. As I figure this blog is mostly an educational tool, I tend to describe the situation more than I would in polite company. It's honestly Owen's biggest problem and has held him back more than anything else.  Constipation is very common in kids with hydrocephalus partly because they have limited mobility and so don't stretch out the body and spend as much time upright as other people.  There can also be muscle tone issues inside as well as out.  We have been battling the poo wars since Owen started solid food.  A few weeks ago he was fed some bananas at school - we had never thought to put that on the list of banned foods because he isn't allergic to them (like he is to everything with milk or eggs).  But they do have the effect of stopping up the whole works and that they did.  After several days of enemas and massive doses of Miralax we did finally get things moving again, but only for a day or two.

Since then he hasn't been able to produce anything on his own without the help of an enema.  The worst is that this is an incredibly painful situation for Owen.  He cramps and then just cries and cries...it's really quite painful to watch for Mommy and Daddy.  And when you are in pain you don't want to do therapy or anything at all.  We are somewhat worried that it might be the increased dose of Keppra that may be doing it - since that is a known side effect.  When we were down at Duke yesterday for a CT (that will be covered in the good news section) we also had them do a shunt series - which is a series of x-rays that shows the entire shunt tract, and also incidentally shows the entire GI tract.  I sent those images to Owen's GI doctor today and he should get them tomorrow to tell us what he sees and what we can do. 

OK, so onto the good stuff!

Yesterday we took Owen down to Duke for his follow-up CT scan from the big surgery.  And the good news is that his current shunt is keeping things nice and stable!  There is no need to have a shunt revision!!!  And a few more !!!!!  As a parent, the worst fear is that you will make a decision that will somehow make your child's situation worse than it was and that was certainly a possibility with this surgery.  It is an incredible relief to know that all is well inside his head - and with all of the progress he has been making with his mobility we are completely sure now that we made the right decision.  So we have a lot of !!!!'s about the way that this has all turned out. 

The CT scans look just about the same as the ones that were taken right after the surgery, so there isn't anything new to post there.  The shunt series though did have two interesting x-ray images that I thought were worth sharing.  They show the lines in his skull where they took apart the bone and put it back together. 

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The big circle with the dot in the middle attached to a bunch of electronics is Owen's cochlear implant.  The other wirey thing across the top of his head is the shunt.  You can see how they pieced everything back together. 

And now for the benefit of all this surgery.  Owen's mobility has just increased by so much.  The other day he was sitting on the floor next to me, next to the couch.  He saw a toy that he wanted which was sitting on the couch.   He turned around, pulled himself up and grabbed the toy as easy as could be.  He has done this many times since.  I did get a video of one of his attempts.  This isn't one of his more graceful attempts, but it is the one that I managed to catch:

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Owen's vocalizations have really improved too.  He's saying "na na na na" for no now.  And he is saying "da da da da".  He did not have either of these sounds until after the surgery.  And he is putting them together with all of the sounds he had before to make much more complex "words". 

Owen can now transition from a sit to a crawl without falling over almost every time now.  This is huge because it means we might actually be able to let him sit by himself soon without needing to be right next to him the whole time.  I'm going to try to get a video of that manuever soon.

So, all in all, it's going quite well.  We couldn't be more pleased with his recent progress.  I'll close with a picture of Owen and his sister checking out the train that goes around the Christmas tree:

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September and October

Oh I have lots to update about!  This is going to be a long one, but I promise there are pictures and videos with this one!

Where to begin??  Well, let's get through the medical stuff first and then work our way to the fun new things Owen is doing.

A Pester of Doctors
There was a cute little anecdote that I wanted to share when I finally got back around to discussing Owen's seizures.  Owen's last seizure was much less severe and he was back to himself by the time the ambulance got to the hospital so we weren't in a panic when we got there.  We brought him to Roanoke Memorial Hospital, which is a teaching hospital and so you expect there to be some extra bodies in the form of students and residents, and this time was no exception.  There had to be 8 different people in the room all at once, with a doc, a resident and student from three different specialties all in at once.  We are generally patient with this sort of thing - everyone has to learn sometime.  This time I did get a bit testy when there were two different people actually trying to put their stethescopes on him at the same time while another was trying to examine him.  I kindly explained that hospitals are stressful places for children and that perhaps only one person should be examining him at a time :-)

Anyway, after they all filed out of the tiny room in the ER I turned to my husband and said, "If a group of geese is a gaggle, and a group of cows is a herd, what is a group of doctors?".  He answered, "I don't know, maybe a Pester?".  And so from that day forward I will never be able to see a group of doctors making rounds without smiling and thinking of them as a "Pester of Doctors".


Seizures
OK, so before this August Owen had only had one known seizure and that was as a result of an incredibly high fever during a shunt infection.  On August 23rd he once again had an incident where he threw up and stopped breathing properly.  His O2 sats dove - we had seen this once before on April 12, 2008.  Both times when we found him he was limp and unresponsive and required intubation for about 8 hours before his body started picking up the slack.  He showed no sign of his body shaking as if in a seizure until hours after the initial incident.  In the April incident they *thought* that maybe he was having a seizure a few hours later because he was shaking, but it was so mild and it didn't *look* like a seizure, it looked like he was shivering.  This August there was no question that a few hours later he had a full blown grand mal (these days known as a tonic-clonic) seizure and it took ALOT of meds to stop it.  In the past few months Owen has also had a few minor incidents where he has thrown up a bit and then soon after gone to sleep but they were so mild and it was at nap time anyway and he woke up happy that I assumed it was reflux and late naps.

When he had another seizure on Sept 9th we started looking back at things in a different light.  This time there was no vomiting and no breathing issues, but it was a fully involved (meaning the entire body, not just one side or part) tonic-clonic seizure.  In both of his previous incidents we assumed that the breathing problems were due to an aspiration, but in both cases the chest x-rays were clean.  We were forced to accept that perhaps it was a seizure that caused the vomiting his breathing problems, not the other way around with the breathing problems causing the later seizures.  In all cases he was asleep when the incident occured.

We also looked at the fact that the last two seizures were associated with the onset of a virus.  In some kids the ramping up of the body's immune responses can trigger a seizure.  Given that we were entering cold and flu season, and every other virus season, it seemed that it would be prudent to put him on a low dose of anti-seizure meds to try and prevent this from happening.  Since Dr. Wilson, Owen's neurologist, had been so against medicating him in the past for a few isolated incidents we really valued his opinion when he said that he thought it was time.  So, in addition to the emergency Diastat, pulse-ox sensor and O2 that we had before - we have added a low dose of Keppra.

We were worried about side-effects but Dr. Wilson assured us that this is a very safe medication that has an extremely long track recond.  And seizures are bad, and in Owen's case infrequent but usually life threatening.  The thing is though, the Keppra seems to be agreeing with Owen.  He has made some sudden leaps in his physical abilities.  We know that he might have just been ready to do that anyway, but it is rather remarkable how far he has come since that last seizure.  So it certainly isn't hurting him anyway!


Cranial Vault Reduction Surgery
OK, I want to end with the fun stuff, so I'll get the surgery discussion out of the way here.  All of the plans have been made.  We have shipped everything we will need for the 10 days out to Dallas.  The airlines want $20 for the first checked bag, and then $30 for each bag after that.  Given the fact that we have to bring Owen's food since he's allergic to milk and eggs this would have gotten expensive to bring it with us.  Plus you run the risk of them losing the bags.  We figured it would cost at least $60 and probably $90 to bring our clothes and supplies with us.  It only cost $50 to ship it out (thank you Uncle Tom for storing it and bringing it to us when we come out!) and now we don't have to fuss with it in the airport.  Getting Owen through security is going to be interesting with all of his hardware.  The cochlear implant will set off the alarms nicely I should imagine - though it's fairly obvious what it is. 

This week we are in quarantine - nobody in or out. If Owen has even the smallest temp or sniffle they won't do the surgery so we're not taking any chances.  Sammy and Owen are experiencing a week of home-schooling.   We run a risk on the airplane but it's three days of driving from here to Texas and that just isn't realistic.

So in just over a week we'll be sitting in Dallas awaiting surgery again.  It's not easy to think of going back to the worries of infection and such, but when you see the videos further down you'll know why we think it's worth it.  Owen is working sooooo hard toward moving on his own and this will hopefully make that much more possible. We will be posting during and after the surgery from my phone and laptop so that you can keep up to date.

OK, Now the Fun Stuff
OWEN TURNED THREE!! 
We had a dinner with his Aunt and Uncle, and then a few days later we did a cake with some family friends:

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Sitting Up Like a Big Boy!
Owen's sitting skills have improved to where he can now have a snack in his green cube chair without sliding down onto the floor:

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Mmmm, pretzels and juice - with a side of architectural training!

Crawling
Remember how I said that he's made huge progress in his physical abilities in the last month, well here's the proof!  Owen is a tiny little guy.  He's below the charts on height, but his head is bigger than mine - so progress in self movement has been slow.  Suddenly though he decided he was going to do this, he was going to get to his toys under his own power and he wasn't going to roll to do it.  He started with the register in the little upstairs bathroom.  I have no idea why the register holds so much fascination for him, but if you put him down in the room he will do everything in his power to get to it.  And here is a video of him doing just that:

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He has now gone from just crawling a few feet across the bathroom to crawling from the living room, through the office, down the hall, through the bathroom and into our bedroom.  He doesn't get his belly off the floor - it's more of an inch-worm kind of thing - but it's effective!

Walking
And now for the big kahuna.  For Owen's third birthday his Uncle (with design tips from his Aunt) made Owen a set of parallel bars that are fully adjustable.  They started out like this:

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And ended up like this:

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He took them apart for moving them to our house and he and Daddy assembled them in Owen's room:

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And a few days later he was giving them a try in physical therapy!

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And you can see the results here:

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It has been a crazy, exciting month for Owen and we can't wait to see what he will do next.  I'll close with two pictures of Owen and his sister:

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We Are Back Home!

This seizure was not nearly as severe as the previous one. I'll post more details tomorrow, but we are home now and happy to be so...

 
Here We Go Again
Mr. Owen had another seizure yesterday afternoon. This one wasn't as bad and this time we were prepared at home. He was napping and his aide Tessa noticed that he was shaking. She got Daddy - I was off getting his sister from school - and they waited 5 minutes. He was still seizing after the 5 minutes so they gave him Diastat. Two minutes later the seizure stopped. His O2 dropped a bit too so they gave him some of that but he mostly kept it up on his own. By the time he got halfway to the hospital he was waking up though. He's mostly back to normal but we're waiting to talk to the neurologist before we go home. 2 seizures in 2 weeks after no history of them is worth checking out.
 
We Are Home!

We are all back together under one roof tonight.  Owen is asleep - he's still napping a lot. He was thrilled to come home though.  He started to look happy as we left the room at the hospital. As soon as we put him in his car seat he started to sign "All Done" over and over again.  When we started up the hill that leads to our house he began his "happy dance" that he does when he's in a really good mood. 

We have come home better equipped than in the past.  We have a pulse-ox so that we can tell if his numbers are dropping during an episode, rather than relying on "Have his lips turned blue yet?".  We have oxygen so that we can help him breathe until the EMT's arrive.  We also have Diastat to give him if he should have another seizure.  We have a very dedicated and wonderful volunteer rescue squad here in our little town, but they cover a big territory and there is only so fast they can get here - especially if they get a number of calls all at once like they did on Sunday night when we called.  These items will buy us time so that he won't be in such bad shape by the time they get here.  If we can just help his little body out a bit when things get started, it will put a lot less stress on his system and things might not get so serious. 

Thank you all for your well wishes, we'll let you know how he is recovering over the next few days.  But for now, we're just happy to be home.

 
We're Going Home!
They have given us the green light to go home. He's not 100% but he's ever so much better. He's smiling at people and playing with his toys. He had a good breakfast. He's still a bit weak and shaky but they said he has a few more days of that. As soon as all the paperwork is in order we're outta here. Yippee!
 
Doing Better
Owen didn't quite wake up enough to go home today but as each hour goes by he improves greatly. When he first woke up at 4:00 am he tried to put his finger in his mouth and kept missing and getting it behind an ear or up his nose. By this evening he could hold his head up with only a little support and could reach for his drink an actually get it in his mouth. He was also saying mama again by this evening. The neurologist says that it could take a few days to come completely back to normal. If all the blood cultures come back negative in the morning and his mental state continues to improve then we should go home tomorrow. Now Owen is asleep so Mommy is going to go do the same. Thank you for all the prayers, they are obviously working!
 
Owen is Awake!
Well more or less awake - awake but quite drunk would be the best description. He has signed for food and drank some juice and silk. He has played with some toys and even gave us a wobbly smile. His coordination is still off and he's very sleepy, but we are miles ahead of where we were yesterday. And I know he's OK because he snuggled up to me and reached up and stroked my face. That is always my sign after surgery or an incident that tells me Owen is back. He should be getting his EEG soon. If he continues to progress they will let him go home tonight or tomorrow morning
 
Oh, He's Found His Finger
Owen has moved the most that he has since last night. He rolled back and forth around the crib for about 15 or 20 minutes until he finally managed to get himself into his favorite position - flat out on his belly with his left index finger in his mouth. A decidedly Owen way to be! He hasn't opened his eyes up yet, but we're definitely seeing some Owen personality coming out.
 
Previous post continued
Please read previous post first. Dr. Wilson also said that some kids can have seizures in response to certain viruses. The same chemical reaction that triggers the body to fight a virus can also trigger a seizure. He thinks this may have happened with Owen. O is stirring!! I need to go!
 
Visit from the neurologist
I have tried to post this a few times and failed. The bigger posts don't seem to work so I will post it in two smaller posts. We received a bit of comforting news. Owen's neurologist stopped by and he said that he is not at all surprised that O is still asleep given the amount of meds he got last night and the strength of the seizures. He poked and prodded him a bit and said that he just appears to be in a deep sleep. He has ordered an EEG for tomorrow just in case there is still any more abnormal activity, but he doesn't think he is still seizing. To be continued...
 
Breathing Tube is Out
They took out Owen's breathing tube a little over an hour ago and he is breathing fine on his own. His sister was here a few minutes ago for a visit, she is staying with my brother for the night. Owen hasn't really woken up yet. He has stirred a bit but hasn't really opened his eyes. They did another CT scan eariler and that looked fine. His temp has stayed down with the Tylenol/Motrin mix. I got to sit and hold him for about a half an hour after they took out the tube so that was nice.
 
On An Upward Swing
Owen is still on the ventilator but they have turned it way down and he is picking up the slack on his own. They are hoping to extubate him in a few hours. He still hasn't woken up yet. Five doses of Adavan and one of phenobarbitol last night really knocked him out. Hopefully he wakes up soon so that we can tell if he's OK. His temp is staying down with Tylenol and Motrin. I'm posting from my phone so it doesn't send out emails about the updates for some reason, but I will update when he wakes up.
 
Owie is still stable
Not much new to report,  but I've gotten word from Michelle that Owie is still stable and still at the PICU.   We'll post more details as soon as we know more.

- Uncle Richard
 
Owen's Bad Night
Mr. Owen missed the PICU so much that he has decided to make a return visit. I'll post details later, but essentially he threw up repeatedly after we put him in bed last night. He couldn't catch his breath and we called 911. He had two seizures at the hospital which was no fun. He's on a ventilator now and is still knocked out from the seizure meds. He's running a fairly high temp and they think it might be a virus. So we are at the PICU at Roanoke Memorial Hospital and he is stable. I'll post more as we learn more.
 
 
 



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