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Little T is back in the hospital

He has a bright red head wrapped with coubain and covered with wires. He's there 1-5 days for extended EEG testing and after talking to the epilepsy neurologist what I want is for him to do things that have brought us there

1. Sudden falling with no attempt to catch himself

Now thanks to the fact that we've talked to his neurologist we've labeled this "going offline" since he claims he's not dizzy and now he sometimes says "I went offline" when he falls. He also says "I tripped" or "I fell" too.

However now he sometimes suddenly sits down

and now sometimes he demands a hug or to be held. Fine and good when tired or cuddly but strange when asked in the middle of intensely playing with trains.

So we want him to do his thing and for the doctors to say "It's nothing. Now go home." Never happened before with Little T but how about just this once? Please.

And may I also add that my boy is damn smart to figure out on his own how to cope with "going offline."



( 7 notes — Leave a note )
Sep. 19th, 2007 05:11 am (UTC)
I'm so sorry. Best wishes for all of you.
Sep. 19th, 2007 06:54 pm (UTC)
Sep. 19th, 2007 05:19 am (UTC)
Yeah, smart kid. I hope you guys are able to get this sorted out relatively quickly.

Do you know airshipjones? He and his son both have epilepsy. Their partners uncledark and purplerabbit have a fair amount of experience dealing with the effects. Your son's situation is more complex, of course, but they're folks "in the community" who could commiserate with you at least. :^)
Sep. 19th, 2007 06:56 pm (UTC)
Us too. We've tried to up his activity level since we've seen nothing so far. Thanks for the names. I don't know any of them but I'll definitely try and see if we can get in touch if it turns out he has epilepsy.
Sep. 19th, 2007 07:49 pm (UTC)
I'm happy to make introductions if you'd like. purplerabbit is also a writer with her own disability issues, so I think you might find some things to talk about.
Sep. 19th, 2007 07:23 pm (UTC)
***hugs*** to all of you.

I, too, hope that things get figured out quickly so he can go home and be well.
Sep. 30th, 2007 08:12 pm (UTC)
He's fine. Thanks for the good wishes. :)
( 7 notes — Leave a note )