Mira had a really rough day yesterday after starting the Felbamate. She had numerous seizures throughout the day and had countless twitches/jerks all day. She was pretty irritable and tired through therapy. Overall, it wasn't a good day for her. At first we were attributing some of it to the medication, but doubt that she hitting any sort of therapeutic dosage after only one day on it.
Today was a much better day for her. She had three bigger seizures this morning, but none in the afternoon. Sarah made some Italian beef for dinner and Mira pretty much inhaled it in about five minutes - she has not lost her appetite, which is great! I spoke with neurology a couple times today and we agreed to keep going on the Felbamate for at least a week or so and watch her closely.
Mira will have to have labs done in about 2 weeks to get red blood cell/white blood cell counts, along with monitoring her liver function. Felbamate has rare side effects associated with it, including aplastic anemia and liver issues, so if it proves to be successful in controlling her seizures, then she will have to get labs done at CMH every 3-4 weeks.
Sarah got our Trolley Run page started for Mira today - details to follow when it is up and running.....