I am getting concerned. This is why I really hate mentioning any seizure improvement...because it never fails to bite me in the...
Last night Hudson vomited at about midnight, and I was worried it may have been illness vs. Mito related. Then it happened again,tonight, not to long ago, but not all day, so I am pretty sure it is seizure related. He was also quietly awake through the night, and awake all day...all unusual behavior. The one thing I feel very lucky about is the fact Hudson sleeps...I have been told kids with Mito are either extremely sleepy or can sleep very little. For Hudson, lack of sleeping hasn't been an issue.
He had 4 tonics today-along with single spasms and after he threw up tonight he had a cluster.
My concern is a new thing...I noticed this a lot today-
It looks like Hudsons head is sort of shaking, but it is very subtle and his eyes sorta wince or squint, he also looks as if he is smiling or maybe it is just the whole face-wincing thing. I can sort of feel this little tremor within his body when I am holding him...what I am describing is pretty subtle movements, but it is concerning me.
Wondering...
*drug related?
*seizure? (Lord help us, NO!)
I really don't feel like I can describe it acurately...just seems odd to me and something is not right. Anyone out there have a clue what it may be?
My description isn't great, I know, but I may call or email Mito nurse.
Hudson Tyler
Our sweet angel!
6 comments:
I'm sorry that I don't have any idea of what it might be, but my heart breaks thinking of how this must worry you! I hope that you will be given some insight. Hang in there Momma! Love, Hugs and Prayers!!!
I so wish I could help. I know of other kiddos with Mito but haven't heard of the tremors before. I surely hope it's not seizure related. Hang in there! You are such a good Momma.
What you are describing is it like a shiver that goes on a bit longer and its mostly in the upper body like form the waist up?
I don't know what it is but Finnian has done the as we call it the shiver and we don't know if its from meds or if it seizures. Its very hard to see on video we have tried but you don't see it.
Sorry not much help
Jude has those too but they were related to the infantile spasms (seizures) just lasted a second or two
Okay so I'm seizure mom...therefore my mind ALWAYS thinks seizures. Sometimes I'm wrong.
But when Trevy was on Banzel he would have this very weird seizure. I know it was a seizure because it was always right in the middle of a cluster. He would shake...much like you're describing. His body would go rigid too. And he would smile really weirdly...it gave me the creeps. It was not a natural smile. They stopped shortly after we were completely weaned off Banzel. So I guess it could have been drug related...but I'm convinced it was seizure.
I wish I could tell you I didn't think it sounded suspicious. I'm sorry, hon. And...I could be wrong!
...danielle
Haven't heard from you in awhile. Hope you are all well.
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