Hey, Y'all.

Just a quickie question...I know that Topomax is often used as an epilepsy med, and for other conditions as well, and that it's now been used as a weight-loss aid. With that knowledge, doesn't the idea of giving it to kids concern neuros? How have your kids tolerated it? I have known adults taking it to say they actually forget to eat! Do your kids still have an appetite?


Thanks for any info!

LIZARD

I have never forgotten to eat, and Im on a huge dose. My two kids are on it, one has a gtube..and she's never forgotten to eat,either has my son.

Riley was until two days ago on 350mg a day. She did have appetite issues for a short time at about 300mg a day but it subsided within a couple of weeks.

Topamax was a last choice for Rileys neuro, only after she had been on and discontinued several (6 I think) other AEDs due to either them not helping, or the side effects being to bad to continue.

She has tolerated it really well, until the last increase side effects would not go away even after waiting about 6 weeks but overall Topamax has been the best AED for her, she has been on it longer than any other AED. I have my fingers crossed that now with the addition on Keppra things will slow down a bit.

Emily has been on it for 4 years. That in combination with Depekene have been the only thing that controlled her seizures. We were hoping to be able to wean off all meds as those seizures have been controlled for over a year, but she's had a couple of possible absence sz that may change that.

We did have a huge loss of appetite. At the time, Em was exclusively breastfeed due to severe oral aversions and between the Topamax and the aversions, we ended up with a g-tube. I'm not sorry about that, giving meds was a nightmare for all of us, but she is totally dependent on it now. However, we are still working on oral feeding.

I do wish that the docs would have warned us of the potential for the appetite loss, but no one said a word. It was the 4th drug we tried, she was seizing 100+ times per day and we were desperate. I don't know that anything would have changed if we'd known, but we would have been better prepared.