The Amazing Owen
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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:


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


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


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).

ct-normal.jpg   ct-owen.jpg

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 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:


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 :-)

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