Seizures and or CP

[Guest guest]

Hey Hilda:

Okay, I'll do my best to make this brief:

A year or so ago, I noticed that DS slept for 15 hours straight, couldn't be woken up, and had a pretty good BM during sleep that didn't wake him up. Called ER and pedi - both were not concerned other than "he's up now? good."

This past August, I noticed DS was very lethargic, and was staring and blinking. Took to pedi (well, an associate of pedi) who's only thought (as he was falling asleep, again, in the examining room) was to check for mono. He had signs of a past infection, but we knew that. Went to Immunology- everything fine (except he can't make an antibody to pneumococcal vaccine). That was the end of that, though DS continued to be lethargic with severe problems at school (again).

Around Christmas we changed DS's Tenex to Intuniv with no real problems. We also started GFCF around that time. Sometime after that, I noticed DS becoming even more lethargic. It takes about an hour most days to wake him up. I also noticed twitches or spasms in his body upon going to sleep and waking up.

About a month ago I went to pick him up at Day Care and he was passed out in the noisy play room and in a cold sweat. He was pale and disoriented when I woke him up. Two days later I get a call from the school nurse that he's asleep in her clinic - snoring. Since then he's been either sleeping at school every day or trying to and they're making him wake up,. His behavior is erratic to say the least. He tells me his head hurts behind his eyes and on the right side, and he can't see when he wakes up. He says his stomach hurts (he keeps having very green BMs every so often).

We've been on Scout camping trips where I've slept with him in a camper (beside him) and he has scared me awake with a whole body spasm, with little jerks and movements after that.

When he was younger, he ran stiff legged like a penguin. As he's matured, he still runs kinda stiff legged with his arms tucked into his side.

We had an EEG last Wednesday (where they noticed some difficulties with opening and closing his eyes). DS does have a significant visual tracking disorder. Although it's been a week, TCH hasnt' received the repoirt - it'll be later this week they say.

I have a feeling the 20 minute nap didn't show any thing (or what's really happening in the morning and as he's drifting off). I'm also concerned with CP due to his running and terrible fine motor skills.

The last I heard from the pedi is "keep a diary." Ummm....okay. Wait to see a neurologist...wait to get another test....watch him continue to devolve at school because I guarantee you he's not getting the right kind of sleep. He sleeps 10-11 hours a night.

Any ideas?

~Crystal