The Amazing Owen
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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. 

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.

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.

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.

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.

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.

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:

  • Higher success rate
  • No surgery involved
  • 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
  • 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
  • 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....


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.



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:


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

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