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gjwinston

Thankful for all the support and knowledge of everyone here

hi there... new to the forum, and just want to say thanks to everyone here. i have learned so much just by surfing this site and reading all of your comments, questions, issues and concerns.

if anyone's interested, here is our story:

my 18 y/o daughter was recently diagnosed with epilepsy due to multiple seizures. she had febrile seizures when she was an infant, but grew out of them at around age 4. had a random grand mal when she was 12. we didn't think a whole lot about it - we thought it was brought on by dehydration. then this past march, things got crazy. she had a grand mal in march, another in april. she was put on vimpat, then oxtellar was added to the mix. then went away to college for the summer and had 3 more seizures in 14 days. unfortunately, in 4 of the 5 cases, she hit her head from falling and had to go to ER for cat scans. another unfortunate issue - had to withdraw her from school. our neurologist said the vimpat/oxtellar combo wasn't working - which was good, because she had some nasty side effects. oxtellar was giving her double vision 2 hours per day and the vimpat in the morning was causing some tingling around her mouth. and there was a little weight gain during this timeframe, as well.

neurologist referred us to a seizure specialist. after our 2-hour appointment, they said she probably had IGE (idiopathic generalized epilepsy), and vimpat and oxtellar weren't necessarily proper meds for that diagnosis. so now we're on keppra and weaning off of the other two (as of today, we're completely off of oxtellar and have one week left of vimpat). no seizures since 7/4. hoping that continues, and the keppra is in fact the best med for her condition. she is presently enrolled at the same school in the fall, and leaves in 2 weeks. fingers crossed.

thanks for listening. this disease really is a crazy roller coaster, and i turn to this site quite often for support and guidance. it's comforting to know there are so many others on the same journey...