seizures are back

[Guest guest]

Looking for advice. Isaac has only been on kd for one month but has

done so well it was breathtaking! We have our boy back! We've been

weaning his valproic acid and are down to one dose of 125mg a day.

He has had a seizure or two a few days after every decrease so when

he had one on day five of this last decrease I wasn't overly

concerned. However on day six he had a day and evening of seizures

(had to give Ativan to allow him to rest), and I wondered about the

heat and humidity. The next day he appeared to be back in the

syndrome -- unable to be alone, clingy, wailing, perseverative,

unable to walk, slumped over, drawn, dissapeared inside himself.

Now a few days later he's not any better and I'm thinking he must

not be ready to come off the valproic acid. He was perfect on 125mg

2Xday. I'm supposed to drop the last dose tommorrow, leaving him

medication free, but I don't think I can. I'm going to call the doc

and ask about reinstating the last decrease instead at least keeping

things the same. I don't want to do anything rash though. If he'd

just had a few simple seizures I would persist with the plan, it's

the return of the symdromy symptoms that has me very worried.

ly I'm really worried that the diet isn't going to work again.

Does the diet ever work like the start of a new med. We almost

always got a good effect on the initiation of a new drug and then

the seizures would break through and the increasing to toxic levels

would begin. I'm not sure I can bear losing him again. Anyone have

any words of wisdom?

Thanks

Kathleen