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Hi Momof5kids,I had it since birth, and I was told that they were grand mals until i was 3 or 4 and when i was 7 I was taken off the meds because I outgrew it. but it came back when i was high school but i didn't know til i this yr when i was diagnosed with focal partial and sleep seizures. My mom told me she believes that if the dr didn't take me off I wouldn't have had they seizures in my sleep in high school, which makes me wonder if she knew and didn't help me when I needed her.
My story is similar, I had my 1st tonic clonic when I was 9 months & took tonic clonics on a regular basis until I was about 3. I was taken of the meds when I was 7 & the drs told my parents I outgrew the epilepsy.
I went 21 years seizure free & I started taking seizures again in 2002 when I was 24. I was sent t hospital because I wasn't acting normal & had a tonic clonic at the hospital, I spent the night in hospital & saw a neuro he next day.
After going through my history of epilepsy with my Mum & I he put me on Tegretol. After that I mainly had simple/complex partial seizures & tried 5 meds between 2002 - 2009.
In 2009 after my neuro put me on my 5th med Neurontin he said there wasnt much more he could do so suggested I look into surgery. I met a epiologist in 2010, went through pre surgery tests & near the end of 2010 I was told I was a candidate to have surgery. I had my surgery on March 2011 & have been going well since with no seizures but I know there is always a chance the seizures can come back.
I was born in the late 1970s so Im in my mid 30s & from what I understand back when I had epilepsy as a baby epilepsy wasn't as researched as it is now & not a lot of people knew much about it.