Thursday, October 11, 2012
Kyle Still In The Hospital With Seizures... A Thursday Update
So if you've been reading my Autism Daddy Facebook Page you'll know that Kyle was in the hospital from Wednesday afternoon for a 24 hour EEG. He was falling a lot the past few weeks. Mostly backwards, at least once a day. And then at school on Tuesday it happened 4 times. We all thought it was a possible side effect from the anti-seizure med that he is currently on, Trileptal.
I was SHOCKED when the wife told me Tuesday night that they wanted us in for a 24 Hour EEG on Wednesday afternoon because of these falls. But we went, and everything went great. We were able to get all the leads on Kyle thru a combination of Benadryl and wrapping /taping him up in a sheet so his hands were out of play. Sounds cruel? The king loved it. He always loved being swaddled as a baby and that's what this must've felt like.
They put all the leads and glue on his head. He squirmed quite a bit, the glue smells bad, the glue drying machine sounds funny, he tried to bite once in a while, but all in all he did great!
And at 4pm yesterday we began the 24 Hour EEG. It wasn't easy for Kyle or for mom & dad, but we took shifts hanging out with him, giving him tons of snacks, letting him watch his favorite videos and he did pretty ok. No meltdowns / tantrums. Yes he tried to pull the mummy hat off tons of times, but he tolerated it all.
We made it til about 11am today when one of the EEG technicians came in and said "we have enough" and started removing everything. The wife and I thought great! We will hear from the doctors, they'll probably discharge us, tweak his meds and we will be on our way.
The falling/ dropping are from something call atonic seizures (also called "drop seizures", that's a perfect name for them). And that's what Kyle was having. And this might be a form of something called "Lennox-Gastaut Syndrome" which I'm kinda afraid to start googling.
But long story short. They want us off the trileptal asap and on a new med called depakote asap. They want this transition from one drug to the other to happen within a few days. And because of that they want Kyle in the hospital overnight tonight, and maybe even overnight tomorrow night, so they can monitor how he's doing on the new med.
Because they are switching meds so quickly and swiftly getting up to a regular dose of the depakote they said that Kyle could be really tired & "drunk" for a few days. I said we can deal with tired and drunk at home, but they convinced us to at least stay tonight. We will see what tomorrow brings, but it appears that we may be here til Saturday.
Meanwhile Kyle is Kyle. Munching on popcorn, stomping around the room (now that he is detached from the EEG) wondering what all this fuss is about.
I guess none of this is too scary (yet?) but the wife and I were SHOCKED when we were told that we should stay for a day or two. It really put us in a funk today..
I guess this blip on the radar is getting a wee bit bigger....
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