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James had a neurology appointment today and we think it went pretty well. We’re still playing around with meds to see if something will work to treat his infantile spasms before we go with Sabril/vigabatrin. There are too many warnings about permanent eye damage with Sabril so we are trying to avoid it. But the more we try other drugs and see minimal results, the more I think we’re going to have to try Sabril.
After discussing several medications with the neurologist, we decided to go introduce Topamax to see if it helps the infantile spasms. We will also start to wean James off of Phenobarbital. He should be completely off of Phenobarbital by July 3rd. I think if the Topamax doesn’t work, Sabril will be our next option. Please Topamax…please work!
James will have another EEG in September with another neuro appointment to go over the EEG results. Hopefully the EEG will show some progress.
