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:

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:

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:

From left to right that's: Diane (Tyler), Amanda (Isaac), Jen (Elijah), Me (Owen), Jill (Matthew), Lisa (Elisabeth) and Kristen (Cayman).  Plus there is Elijah trying to get to his Mommy.

A chat, plus some just plain silliness.  We all rode the Maid of the Mist together that afternoon.  Depending on which camera was pointed at us, different people's faces were blotted out by the water drops: