Mira started Felbatol on Tuesday and so far it has been a disaster. We didn't think things could get worse after her reaction to Diamox, but Felbatol upped the ante. Mira did fine for the first day and a half, but by Thursday evening, she was constantly irritable. She got up at 1:00am and stayed up until 5:00am, crying and fussing pretty much non-stop. The irritability continued all day (Sarah can go into details) and we had a repeat performance Friday night, where Mira slept for a total of 2 hours, only after she was postictal after a seizure. She had a number of them on Friday.
Saturday, she cried most of the day, sleeping only again after she would have an intense seizure that would drain her completely. We saw at least 4-5 intense seizures Saturday, where Mira was really struggling through some of them and her breathing became more labored throughout the seizure than usual. We contacted the neurologist on call through CMH and told him we wanted a weaning schedule to immediately take her off of the Felbatol. This medication was horrible for Mira.
Today was much better for her. We dropped her dosage last night and she slept for 10 hours straight. She had three seizures today, but has been in a much, much better mood. She even smiled some. We plan on continuing to wean her and will talk to her neurologist in the morning, to discuss yet another alternative.
We are so completely frustrated with the medication train again. We made the decision to take her off of medications last year for six months and nothing changed. Her seizures continued. We started trying medications again in January and so far, it has been a really rough road for everyone, escpecially Mira. We realize that she is most likely going to make little or no progress until her seizures are under control, but right now, the risks of medicating are far outweighing the potential benefit. Everyone is exhausted.