HI!

My daughter is almost 9 years of age.--has bilateral MMD, was treated at SickKids in Toronto, Ontario,,Canada by Dr. Peter Dirks. She had 2 surgeries in 2006 and 2008. My question is about meds: She is presently on 150 mg twice daily of Tegretol (for seizures) and Aspirin 80 mg or 40 mg on alternate days.

Is anyone else on Tegretol? My daughter is Chinese--I've heard about risks--HLBA-B*1502? please see the FDA warning about Tegretol for further info.
Is anyone famililar with that?

Also--I'm concerned about long term use of Tegretol and Aspirin on liver, kidney etc. EEG shows there is still some seizure activity so neurologists don't want to wean her off yet. I've asked about an alternative to Tegretol but they don't want to take the chance of changing her medication.

Generally she is doing well, though she does have some tics--usually left leg and shoulder, sometimes a vocal tic but it's transient. I understand the tics/tremors could also be a side effect of the Tegretol.

Any thoughts would be appreciated!

Thank-you

Dawn

I used to be on Tegretol for "silent seizures" which I was diagnosed with before my MM surgeries. I took it for maybe six or seven years. A few years ago my diagnosis was revised and I stopped taking it. My liver has been compromised, and I have my liver enzymes checked every few months, but I've lost some weight and the docs think it's ok now.