Community Forum

Two daughters with epilepsy?

My 19 year old daughtere was diagnosed with Juvenile Myoclonic Epilepsy shortly after she turned 16.  She had been having mycolonic jerks for about 1 year prior to having a full blown tonic clonic seizure while she was at a sleepover.  It scared her friends half to death, I am afraid!  She has, since having been diagnosed, had 7 seizures (that we know of).  One of them was due to not taking her meds on time.  The others, well, we think it was due to stress (she is a college student) and lack of sleep.  She was on Lamotrigine, and now is on Lamotrigine, Clonazepam and Topamax.  She is weaning down the Topamax due to some cognitive issues and dizziness.  We are hoping that we can get her on a lower dose permanently.  Her last seizure was in January. Fingers crossed!  We recently switched neurologists because we were not happy where we were.  While visiting with her new neurologist a couple of weeks ago, she mentioned to him an episode that my 15 year old daughter had.  Right before she got into the shower one morning, she said she felt little muscle spasms all down the left side of her body.  After they went away, she got in the shower and shaved her legs.  She was getting ready to wash, had the pouf in one hand, the body wash in her other when all of a sudden she dropped both.  She can remember doing it, but nothing else after that (like them falling or anything).  She could not really do anything to stop them, and then she opened her eyes and they were on her feet.  She had no ill effects or anything after that.  The new neuro told us she should be evaluated.  Since he doesn't see pediatirc patients, we were referred to the clinic at Children's Hospital of Wisconsin (right next door to where this new neuro is).  We have an appointment for August 7 to have her evaluated.

Just this past weekend, she had a sleepover at a friend's house.  When I picked her up on Saturday morning, she said that as she was getting ready to go to sleep, she had several twitches in her legs.  She said they weren't REALLY bad, just bad enough for her to notice.  Think I should call and see if they have a waiting list or something?  I would like to avoid a full bown seizure. 

Anyone else have two (or more) children with epilepsy?  My mom has it (she was diagnosed about 10 years ago) and I had it (I had a fever related seizure at 4 years old, then had a full blown tonic clonic seizure when I was 11.  I was on phenobarbital for 7 years, was taken off cold turkey after an EEG indicated all was well--haven't had any since--although lately I suspect I might have partial absence seizures).


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