Community Forum Archive

child died

Fri, 11/01/2013 - 21:33

hi all

about 4 years ago I had a 13  yr old that died from JME.  she was having more than 200 abcsence szs a day along with some T/Cs and myoclonic szs as well.

 no one could get a handle on it it was so bad.  she was inn an dout of EMUs and considered for sugery that was a no-go and then had a VNS.  that gave osme elifebut did nothing to stop the petit mals.

she went form doctor to doctor and it just could not be slowed down.

at one point she was taking 5 and 6 meds an d they did not good.  she eventually passed away at 13 ys old.  I have a 17 yr old at home with grand mals and they re pretty much under control.  I have LTLE and 3 meds and a VNS.

not well controlled but the VNS did help a lot.

the kid's epilepsy was not heritary is was just a fluke thing that just happened.  we all had different kinds.  JME T/Cs and TLE.  NO match for any of them.

I jus thought I wuld shae that part of on eof my childs story with you.  I ive in HI on O'ahu

Nancy

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