Jen - Zonegran

[Guest guest]

Hi Jen:

Thanks to all of you who replied to me. My son has never been seizure

free (well, since he was vaccine injured, aneurysm ruptured twice,

subdural hemotoma, etc...) on the diet. He had so many seizures that we

could not count them, probably in excess of 500 per day. We did HBO and

the numbers decreased. Then we started the keto diet and the numbers

decreased. We ended up on Sabril and clobazam and the numbers seemed to

come down. I took him off clobazam and the numbers seemed to be the

same or maybe decrease a little. Hard to say. We are still having

30-80 seizures a day. This is great compared to where we have come

from.

We have been on the Sabril for a while now and the side effects of

vision loss scare me. We are doing a lot of therapy for to help

him regain his vision and we sure don't need this working against us. I

had planned on a wean from this. We just saw this neuro for the first

time on Friday and we liked him. He seems to be on top of it and also

wants to get off the Sabril. He wants to get him on Zonegran

first. So we have had 2 days on it now. He has the dose of 100 mg one

time a day in the evening.

I was wondering if anyone noticed any side effects that I should be

aware of? The neuro said it was a pretty good drug with minimal side

effects. That seems to be the same thing I am finding out from the

Parents (who are the real experts!). Thanks so much!!

We are still on the 4:1 ratio that we started on 2 1/2 years ago on the

diet. He plans to wean off the diet within a year I think.

Thanks again, Tammy