Side effects of Sabril

[mouse goddess]

What would you do in this situation?


A new neurologist we're seeing recommended http://www.sabril.net/
for our kid's seizures. She mentioned the possibility of the severe vision side effects, but seemed unconcerned about them. It wasn't until I got home and looked it up that I saw the wording on the site.

Maureen already is pretty much blind, but we're undecided if it's permanent, or if it's a case of delayed visual maturation.

On one hand, the first priority is getting the seizures under control, and we've already tried two other drugs with no success. But on the other hand, I don't want to sabotage what little sight she has, or may get in the future.

[Horse Chestnut]

i don't know much about Maureen's medical problems, MG, but it is a scary decision to make, especially when you have tried multiple treatments without successs. (Going through that myself, right now.)

Has Maureen shown sensitivity to other drugs? Also, have you looked for forums where other patients have been on the drug and gotten feedback from them? What other meds are out there, or is this the last option?

[kizzcee007]

It's a very tough decision and I really feel for you.
What is the prognosis if the seizures are not controlled? The other question I have is what will be the child's quality of life with seizures as opposed to her quality of life without sight but seizure free?

[franjava]

Ugh... what a hard decision. I agree that you should find other people who take the med. I also wonder what the effects of long-term, uncontrolled/undercontrolled seizures are. Is the one thing you're worried about with the med better than the possible problems with just letting the seizures go untamed? I've heard of people putting their children through temporal lobectomies to control severe seizures. It was a viable option in a bad situation (these kids were having about 100 seizures a day.) A lobectomy causes slight weakness on one side of the body so they have to go through PT/OT to regain lost abilities. The parents and doctors thought this hardship was better than the alternative.

One thing we have learned from snopes is that research is your best friend. ((vibes)) for success! Keep us updated.