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EEG Results

Posted by anonymous on August 23, 2011 at 11:40 AM

Very good news coming out of the EEG. Well, relatively speaking :)   Which is what we get as parents of this special boy.

Simon is having myoclonic jerks again.  Sometimes they cluster (as they did Friday morning during the EEG for almost 90 minutes).  Myoclonic jerks are the least innocuous of seizures.   (Is that an oxymoron?)  Anyhow, all the other episodes--silence, staring, hand in mouth episodes are NOT seizures!  Thank you God!  These type were more frequent and longer, so we're so glad they aren't seizures!  Now, why he's doing it, we don't know.  Could be the meds, could be Simon.

So we have clearer orders to give the school now for treatment.  In a week we may be weaning off  one of the meds and increasing another, and if that works, we may be able to back off the Topamax, which could be part of the sleepiness and extra drooling.  (Lovely, huh?)

Soooo, it was well worth going and sleeping on the "park bench" in the room.  In December, ALL PRIVATE ROOMS!  Will be so happy for that!

Thanks for all the prayers.  They work and they really buoy me up as well.

Gretchen

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1 Comment

Reply Nicole Schmidt
03:26 PM on August 23, 2011 
You are right, this is good news, relatively speaking! Andrew had myoclonic jerks for about 1 1/2 years and then they just stopped. But, there are two different types of MJ's?? One that is seizure related, and one that isn't. Andrew had the one that isn't. I know that is vague, but perhaps you are a bit more well versed than me on this topic? I do know that he did not progress a tremendous amount developmentally when he was experiencing those jerks. Hugs your way. So glad you have more of a better idea of what you are working with! xoxo

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