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Daughter's recent epilepsy

Tue, 09/06/2016 - 00:09
My 22 year old daughter was diagnosed with epilepsy late last year. She has always been healthy, former competitive gymnast, contemporary dancer, ballet dancer, athletic. As a child she did experience vasovagal syncope when she would tilt her head back and stretch her arms. So, of course, once we figured that out she stopped that particular combination of moves and the syncope went away. Last year she had moved to Houston from home (first time being away from home) to attend Univ. of Houston. About two months after her move (approx. Oct. 17 2015), she experienced her first tonic-clonic seizure and suffered a concussion as a result of the seizure. We really didn't know anything about this, so she continued to attend U of H. Approximately one month later (Nov. 9-10 2015) she suffered two more tonic clonic seizures. I flew to Houston and moved her back home. She was able to withdraw due to medical reasons. In Dec. 2015 she suffered 5 seizures on Dec. 16-17 within 6 hours. She fractured her shoulder-left proximal humerus fracture- during one of the seizures and had to have surgery within 2 weeks of the fracture. She had the surgery, was put on Keppra (500 mg every 12 hours, the bumped up to 750 mg in preparation for surgery, then increased to 1000mg then 1500 mgs). Seizure free for almost 6 months-well, what we thought was aphasia is actually partial seizures and those developed after her first seizure in Oct. 2015, then breakthrough seizures one week apart, July 6th then July 6 and July 13, 2016, and then another one Aug 8, 2016. She was put on Zonisamide (we were thinking her menstrual cycle maybe has something to do with seizures) and she is slowly tapering off Keppra. This is scary. This is life changing. A healthy athlete, honor student, she has Aspergers, she is a self-published author (2 books). We are looking into everything that could possibly reduce the seizures, along with the medication - essential oils (frankincense, jasmine, lavendar, etc.), to coconut oil, to magnesium. This is our story in a nutshell. She doesn't talk much about how this is affecting her, however I can see how she's changed. Her mood is different, her behavior is different, she struggles silently. If anyone has any feedback, suggestions, or other support to offer, it would be most appreciated.

Comments

What she did has been done by

Submitted by just_joe on Tue, 2016-09-06 - 16:18
What she did has been done by many people with epilepsy. A person can be in the first string in sports and an honor student bt that doesn't mean they will not have epilepsy. epilepsy does not discriminate. the rich, poor, young, old white, black or even purple.Her move to Houston and starting college is stressful. Stress is a trigger. Seizure free for 6 months while taking keppra. With all the seizures including teh breakthru seizures did you discuss them with the neurologist as they happened or wait till the next appointment? I ask that becasue dosages can be changes which would reduce the number of seizures. That would have been the things a good neurologist would have done after the first or second seizure it they had been called.we were thinking her menstrual cycle maybe has something to do with seizures    We are looking into everything that could possibly reduce the seizures, along with the medication Her mood is different, she struggles silently

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