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on behalfI of my daughter

I am joing this group on behalf of my daughter who died at 13 yrs old from JME.  Hers was a rare type.  No one could get a grip on it and she had more than 200 petit mals a day along with T/Cs and myos.  She was in and out of EMUs so many times everyone knew her by name.  She wasin anywhere from 2 days to  3 weeks.  On the longer stays is when they had a chance to see all the absnce activity.  too much to handle.  She had a VNS omplanted but that sis not stop this rampant type.  it seemed to be running her into the ground.

2 weeks after she turned 13 she passed away.  she had been on 11 different meds not all at once, and all that kind of stuff.  had bad reactions to some ot htem had to change them ot combosx around etc.

WE were just devested when this happened.

her sister Grethcen also has szs as well but not like that.  hers are pretty much under control right now.  she has T/Cs and I have L-TLE with 3 meds and a VNS.

Sorry it is NOT me that has JME.

We also live in Hawaii on O'ahu.

Nancy

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