[epilepsy] nocturnal paroxysmal dystonia

 

Megan's "episodes" started in 2008 and were not identified until 2009 as being
possible seizures. After lots of testing and drs. we we finally have a
diagnosis. I am sure many of you can relate. Our doctor wants us to see one
more dr. to confirm his diagnosis. He stated that nocturnal paroxysmal dystonia is rare
and so finding another dr. who knows much a bout it is hard. If this one in
Stanford isn't familiar then he says he only knows of two others and they are so
far away.
Anyone else have this diagnosis??
Next we have to decide weather to treat with medication. We tried generic Kepra
and it seemed to help but it didn't last. The dr. said that drug doesn't in this
type. I am not sure but I think he said carbamazepine but he said it could have
some bad side effects. I was hoping we could have to something to help her stop
them when they start like on a night by night kind of thing.

Jamie (mom of Megan age 10)

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