Hello everybody, I'm curious if anyone knows anything about Topamax (topiramate).  It's typically an anti-seizure medication.  However, my son's doctor wrote a prescription for it today.  He prescribed it to help with Brady's weight gain due to steroid use.  I'm not finding much information about it related to Duchenne on-line or on the PPMD site.  Any info would be appreciated.  We won't start it right away because he has some bowel issues we need to deal with first.  Poor guy.



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Hey Patty, it's Ryan. 

I spoke with Pat. Topamax is not typically used. Metformin is recommended.

Has he had a recent comprehensive workup?

Some things to look at...

If he has had blood tests for sugar
If this gain has been sudden or over time.
Who is prescribing - neurologist? Endocrinologist?
If he has sen cardio.

Feel free to email me and I will loop Pat in- ryan@parentprojectmd.org 



Hi Patty,

Just a warning regarding Topamax.  I am epileptic and had to switch to Topamax so I could have surgery.  I too was overweight because of previous medication use.  I went from 165 to 118 within approx. 4 months.  That was 3 years ago.  I have not been on Topamax for 2 years now, but I am now classified as having an eating disorder, and on the verge of anorexia because of it.  The only time they will prescribe this medication for seizures is if you are overweight because of the drastic effect it causes. Be very careful!  Listen to Ryan and Pat!!!



My son took topamax for 5 years and didn't lose a pound and didn't have any other side effects either. There is a possibility it contributed to his kidney stones, but he was on very high doses. He was taken off of it because he had seizure control with his vagal nerve stimulator.

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