Tuesday, January 21, 2014

I really hate Doose syndrome http://doosesyndrome.org or Monoclonic Astatic Epilepsy (MEA). Why couldn't he just have regular toddler or childhood epilepsy? Why Doose?

It really is an emotional roller coaster. Tuesday, January 14, he had a small tonic clonic in the early morning while he was still sleeping. When he woke up that morning, he did not have another noticeable seizure, not any falling asleep jerks, eye flutters, trigger drops or anything until Saturday, January 18 right after falling asleep he had a couple open eye quick jerk things. Then the next night, Sunday, the same thing, a couple jerks. The falling asleep jerks have actually been fairly common for him for months but it was just nice for those 4 days not to see anything. Monday, January 21 he had another tonic clonic in his sleep at 4am. This one was a little worse than the last. 

I'm not really sure what to so next. There are always so many variables. For instance, the stretch that he was seizure free he was still getting over his flu bug and had loose stool. That stopped I think the night that he had the jerks. Could that have something to do with it? If I remember correctly, the same sort of thing happened the last time he had a virus with loose stool. Or maybe he's been drinking too much soda and Powerade Zero. The last couple days his ketones have been all over from small-large. I don't know if the soda is lowering the ketones or just deluding his urine so thy appear small but are really large. It's hard to get him not to drink soda. It's really the one thing that he gets and likes that is a treat that the other kids don't get. 

Maybe we need to increase his ratio again. Butt I don't want to have to do that if it's just the soda. It's funny because he had just as much soda during the 4 days of no seizures. His doctor gave us a tentative plan to first increase ratio which have done already for a week to see if that will take care of his remaining seizures. If that didn't work then she wants to increase his mediation (Keppra) by a half of pill at night because that's when he seems to have the most activity. Right now he takes 3 250mg pills every day. If that didn't do the trick she wants to switch up his meds. altogether.  Ween the Keppra and add another to go along side the diet. I'm not sure of the name though. I know it's nothing I have heard of. 

So, that's where we are at now. We haven't made any changes but I think I'm going to start limiting soda to see if we can't boost his ketones. 

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