Does anyone take the drug Felbatol?

[mspang]

I started taking Felbatol along with Depakote in 1997 while living in AZ that put my seizures in remission for three years until I moved to Texas. Unfortunately after finding a new neurologist in 2000 the doctor took me off of the Felbatol. He said it could cause liver failure, and aplastic anemia which is a condition where bone marrow does not produce sufficient new cells to replenish blood cells. Well being on the drug for 3 years and the fatality rate in the range of 20 to 30% at the time, I really wish I didn't get off it. As now exposed patients for whom data are available has ranged from 5 to 30 weeks. Unfortunately my new neurologist at the time was to scared to keep me on Felbatol so he started me on Lamictal along with Depakote. This ended my remission, but kept my seizures that would have me go unconscious to only a couple every few months and only at night. Which still allowed me to drive up until 2007 where I would start to have the grand mal seizure. I would start to have those about every two weeks morning, noon and night. Now not allowed to drive. So eventually not to long after I had to get the Vagus Nerve Stimulator implanted because no more drugs worked for me. But unfortunately the VNS really didn't help and I continued with seizures about a year and a half. Then finally in late 2009 I had brain surgery at Stanford to remove the scar tissue that should of fixed things, but of course surgeons were unable get to the scar tissue since the abcess was so long ago. So the only thing left for me to do was to take Felbatol again along with Depakote and Lamictal to stop the seizures and it has almost completely worked. I believe my seizures are almost back in remission as I now only have them every few months again.

[Dutch mom]

Hi,

My son with Lennox Gastaut syndrome was on Felbatol for a short time, by then it was only prescribed to Lennox-Gastaut Syndrome patients in the experimental phase. We decided to take him off felbatol because of the risk of these side effects you mention. Those can be irreversible and even lethal. Aplastic anemia and liver failure even can occur when someone is allready off the drug for months/years, this has happened to two children I know. My husband and I found this to risky, we took him off against the advice of his neurologist and started him on the ketogenic diet succesfully. About 8 years ago Felbatol was the only drug specificly used for Lennox Gastaut, since a few years there is rufinamide (Inovelon) wich has less severe side effects, several other Lennox-Gastaut Syndrome-kids I know are on this new drug, only few still are on Felbatol.