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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.
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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.
WRONG!
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….
🙁
i am thinking of you and sending good thoughts. I read often but don't reply so much – depacote caught me though. My son was on this med for quie a while – he was on it for agression. Started at 1 a day till we got to full dose of 4 a day (2, 2x daily). What I found was this drug knocked him out. he was not functional. he fell asleep at school, slept through doctor appointments, napped constantly, was sleeping over 14 hours a day, and he gained 40 pounds. We dropped the depacote last month becuase it didn't do a thing about his hair pin trigger anger and agression. I hope it helps your son with siezures. Hmm, I still have 70 or so of these suckers left, shame i need to put dispose of them when someone could use them. – Kerry , davidkerry@earthlink.net
I hope the meds work. I take care of a 23 year old adult male with eyautism whom they used depakote on. It worked really well.
Thoughts and prayers to you and your family! must be so scary to go through….
Healing prayers sent your way ♥
Keeping you guys in my thoughts. I hope the King is better and home soon! Please you guys keep your chin up as this all sounds very stressful! Wishing you all the best!
praying for all of you. my son had his first seizure a month ago-grand mal=scared the crap out of us. EEG showed nothing, nor did the MRI. Now we just wait and see if he has another one. I hope the change in meds does the trick for your sweet little guy, and he's back to normal in no time!
Sorry to hear about the extended hospital time, but perhaps it's best considering all the tweaking that's going on. It sounds like Kyle is handling things pretty darn well — you guys know all about proper pre-production planning, so I'm sure he's got all the necessities for a comfortable stay.
Sending my best wishes your way.
All in all it sounds like Kyle is handling this whole situation like a champ. Way to go buddy!
I'm sorry all of this extra crap is going on. But I do agree that staying in the hospital through the medication transition is best for all. If anything should happen at least you have doctors right there to treat him.
Sending you healing thoughts and peace.
I have a few students on Depakote. Works great for them!
Oh, I hope this is resolved soon.
Hey, my son has Doose syndrome which is very similar in nature to Lennox. He has drops all the time. We are on a combo of depakote, keppra and topomax. This help alot with control but he still has several drops a day. I believe these 2 syndromes are rare and hard to control. I wish you guys luck as I can surely emphasize. My son is autistic as well and its hard but worth it. Im sure you definately understand. Best wishes and lots of love
At least they found something! We usually go through 'hell' with my son, and then they can't find anything wrong!
sending prayers your way. I am sorry yall are going through this. Hope all works out soon.
Hi, I feel for you guys. EEGs suck as do med changes and fun new seizure types. We tried Depakote with my daughter but it didn't stop the seizures and ended up giving her liver issues (which went away after we stopped it, not to give you one more thing to stress over) for us, what stopped her seizures was Lamictal and High dose prednisone. The thinking was that she had a version of Landau Kleffner. She is a mystery, very similar to Kyle, so just wanted to mention it. Hoping the Depakote works for you and this is non necessary information (as every kid is so very different), but something to keep in mind. Best wishes that the new med blasts these new crap seizures out of the water and your little man is home happy again asap.
Hugs & Prayers & Hope, which I know you both always have.
Diana
Best place for him until its all sorted. Little compensation I know. ………. hope he's home soon.
sending lots of love and encouragement and healing thoughts for your boy, hang in there