[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 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)

__._,_.___

Reply to sender | Reply to group | Reply via web post | Start a New Topic

Messages in this topic (1)

Recent Activity:

• New Members 2

Visit Your Group

Just a friendly reminder: Please remember to sign your post and remember to clean up messages when you reply to them.  This is especially important if you are on digest.  This not only helps out the list owner but, it makes messages much easier to read when they arrive in our inboxes.

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

.

__,_._,___