Friday, November 8, 2013

An Epilepsy / Seizures / VNS Surgery Update — 11 weeks after surgery...

Three days ago, on Tuesday, has been 11 weeks since Kyle had his VNS Surgery for his epilepsy / seizures and 9 weeks since we had the device turned on so I thought it was time I gave y'all an update on things.

It's hard to give an update on one thing without updating y'all on everything cuz they are all intertwined.

Anyway, he had the VNS device turned on on Tuesday September 3rd and he's had the "current" increased 4 times since then. We go back every 2 weeks or so to
get it increased.


Kyle is up to "Visit 5"


And I gotta say that we've seen a significant decrease in the amount of seizures Kyle is having!  He's gone from having literally 4-5 seizures per day to maybe 4-5 per WEEK!   And the few seizures that he is still having don't seem as severe.

Really awesome news for this early on! Especially since they tell you not to expect much difference for the first 8-12 months or so.

And the scars are healing nicely…


these pics are actually a few weeks old, at about 9 weeks after surgery

you can kinda see the wire in this pic...


And he doesn't seem to feel / react when the device goes off at all...

And the last time I wrote I was complaining that Kyle was sleepy/ zombie like for big chunks of the day and I was contacting Kyle's neurologist trying to get him off this med "Banzel" ASAP.

She agreed that he needed to be off one of the meds ASAP but she convinced us that the banzel was helping him and we'd be better off getting him of this other med "Onfi" which is more known for having sleepiness as a side effect. So about a month back we slowly weaned him off the onfi and his energy level slowly came back to "normal".

Now his energy level is completely back to "normal". He still sleeps well at night thank god, but no more naps in school or in the afternoon. And he is pretty much back to his "normal" bouncy, hyper, breath holding, flappy, crazy, autistic self!

So the fact that 11 weeks after surgery and 9 weeks after turning the device on we were able to eliminate one of his antiseizure meds AND we are still seeing a significant decrease in seizures is HUGE and more than we could have ever asked at this point!

The only concern we have is that he's lost 5-6 pounds since the surgery and his appetite has decreased significantly. And weight gain and eating has been a huge issue for Kyle in the recent past.

In fact it was one of his of his other antiseizure meds (depakote) that we credit with helping him finally put on some weight back last fall.

Before depakote he was EXTREMELY skinny, and stayed about the same weight for 2+ years.  And literally every freaking meal was a struggle.

He started taking depakote for his seizures in October 2012.  At that time he was 9 1/2 years old, 61.6 pounds and 53 inches tall.

By mid February 2013, he was 72 pounds.  Up 10 pounds in 3 months.

By late June 2013 he was 85.4 pounds and 56 inches tall!

And right before the surgery he was 86 pounds & 57 inches.  So he put on 25 pounds and grew 4 inches in less than a year.

Now he's back down to 80 pounds and his appetite just isn't there.  So we are back to letting him eat literally ANYTHING he wants (BBQ chips for dinner, and bacon for desert :-) and following him around the house to get him to eat forkfuls of food.

Could the surgery have affected his appetite?  Well if you google long enough you'll find what you're trying to find.  Yes, there are rare cases where it does.

But we need to accentuate the positive.  The surgery has dramatically improved his seizure activity!  And we've been able to get off a med.  And seizures are a lot scarier than appetite concerns…

But with me and the wife, (more me than her) things got so good and so back to normal so quickly that we begin stressing about his appetite or his breath holding (which is back with a vengeance) and didn't stop to smell the roses…

He's having a ton less seizures!!

He's full of energy!!

He had an amazing Halloween and really enjoyed everything!

His mysterious limp is gone!

All good stuff!  So now we just need to handle appetite issues & insane breath holding behavior…and the regular daily craziness that is just plain old severe/non verbal autism  :-)

But things in epilepsy land are looking up!!

He's got some other new unrelated medical issues that I'm hesitant to write about here…  So I'm gonna end it here on a positive note...

Over and out…




9 comments:

  1. Good stuff. Hope he gets his appetite back.

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  2. Hi there. I am glad he is doing well! I know you just said his limp was gone, but I stumbled across an article while looking for something in my Biology class that I thought you may want to read. My little one is on the spectrum, and is super finicky... anyway, this article mentions a mysterious limp, associated with food. Just FYI. :)
    http://consumer.healthday.com/cognitive-and-neurological-health-information-26/autism-news-51/what-happens-when-a-child-with-autism-refuses-most-foods-681772.html

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  3. You have to look at the positive or you will go freakin crazy!!! Great news!

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  4. Such fantastic news!

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  5. I'm happy the king is doing better!

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  6. I am glad Kyle is doing better! The appetite can comeback gradually or maybe is not quantity but like more dense calories food he can eat.

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