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Father that's new to world of epilepsy

Mon, 05/08/2006 - 14:40
New to the site and wanted to say hi to everyone… My story: My daughter (3 years old) was just diagnosed with epilepsy. She started to have spasms in the face at 18 mos (then went away), then at 2 she had a few spasms in the right arm - then about the early April she started falling down because of them: Muscle tensing, arms straight out and holding her breath for a few seconds. Wierd thing about it is that once they are over she goes right back to what she was doing as if it didn't bother her. She started having them about 6 times a day – so we went to a great Children's hospital in Ft. Worth - after EEG, MRI, Blood Work and ECG - the doctor said she was ok and said keep us posted. WHAT!?! That weekend it kicked in more and she was having about 60 a day (lasted less than a minute) almost every 5 to 10 minutes – with an hour apart, so we went somewhere else. The new doctor diagnosed her with epilepsy (bi-lateral, multi focal generalized seizures). He put her on Depakote and that only seemed to reduce the severity of the seizures. She was still having about 70-80 a day. We just got back from another over-night hospital stay (EEG) and they tried Diastat (didn't work - just made her drunk) and then Felbatol - which knocked it out in 2 hours. So far she's almost 48 hours without a seizure!!! Still scared about this though. The doctor said he was still concerned about a few things (seizures appearing on EEG without physical signs). He mentioned that this could be a case of Lennox G. That’s frightening!!! Her brain waves are normal though – and she’s REALLY smart (she’s starting to read at 3). So I guess that's good. As I said, I'm new to the site and would like to meet people and learn how to deal with this and gain more knowledge. Anyone with experience in Lennox G or something else you find similarities with, it would be great to hear from you. Thanks! Eric (FYI - as for my site name. I'm not a real doctor, I do public relations)

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