We met with the neurologist yesterday and he wasn't thrilled to hear of her having so many generalized tonic/clonic seizures lately. We don't normally have this many (grand mal) so it was definately out of the norm for her. He always says he thinks "it's a progression of her epilepsy" which is concerning.
We are weaning off the Topamax, since it didn't help her seizures and in fact seemed to make them worse. Plus all she does is sleep and whine while on it. We are starting Trileptal in it's place, to go with the Keppra we are still on. He explained that Trileptal works for focal seizures, which is what her EEG showed last time. Then they spread to secondary generalized ... so if we could stop the focal seizures, we should be in turn stopping the grand mals.
Cross your fingers. He says we are getting to the end of his expertise, and the end of the meds available. We will be moving on to UCLA Epilepsy Center soon. Our neuro is private practice, so there's no one else there to consult with or get a second opinion from. He said he thinks we will need to start discussing vagus nerve stimulators or brain surgery. Ick.
Does anyone have experience with VNS? He thought that the patient has to be 60 pounds to get one. We are barely 30 pounds, and not getting bigger any time soon. Does anyone know if that is true? I can't find information online since it is only "approved" for kids 12 and up.
Thanks in advance. And thanks for always reading our seizure blahgs. ;)
