Nicholas had 2 seizures within 12 hours of each other.  We ended up in ER w/ the 2nd because we ran out of Diastat and his breathing was shallow.  The ER put him on O2 until his numbers came up and sent us home a few hours later.  Since we have been home I have had to use O2 just to keep his pulse-ox above 90, he also is less responisve, and sleepy.  I'm wondering if any of the children have gone through anything like this.  I have a call into the Neuro, I'm hoping to have a 24 hr eeg and mri done on Nicholas ASAP. 

Brenda

O2 levels of Sarp decreases when he is having pneumonia. Other than infections we haven’t faced such a situation. But as far as I remember I have heart about that from Jacob’s mom (From the book: Lessons learnt from Jacob ) and from Ben at his homepage.

I hope this will be the last seizure for you.

When Kyle had his seizures it seemed to take alot out of him and for a few days after he slept alot and was very out of it.  I think it takes alot out of him.  Luckly he didnt have to have O2 at home but did so in the hospital untill levels were back up.

Brenda,

 With Vinny I've learned not to fear the seizures as much as I fear what happens to his oxygen levels. That's the worst part right now, his last seizure he dropped down to 42% on his pulse ox and that was just a minute after the seizure started. I hate to think what would happen if he seized in the middle of the night. And he always sleeps the entire next day - after a big one he's been known to sleep 36 hours straight. It actually sounds like they're alot alike this way!

Kara

Hi

Ben has these seizures too but since he has been on a mix of phenobarbital and tegretol that are much smaller and where as they used to last for hours they only last a matter of a few minutes now unless he misses his medicine for some reason ie if he has been sick.  If the big seizures start to break through his medicines are increased, this usually happens about once a year after a growth spurt.  Recently Ben will get moany and groany for a hour or so before a seizure and we have come to realise he knows when it is on the way.  There's a lot more detail about his seizures on his website.  During his seizures we keep the o2 on the whole time.