Its been 14 months since my daughters seizures returned. She was seizure free for 2 yrs. after surgery. She is 13, soon to be 14 and they started up (different from the pre-surgery) when she started her period. Prior to brain surgery we tried 14 meds, keto diet. Weve since tried progesterone and birth control to help with hormones. Her seizure clusters are every 2 weeks (ovulation and menses). In the past month Ive tried gluten free and added nutritional supplements. Ive done it all it seems and we still cant stop them. Even rescue meds dont work well for the clusters. They each last about 1 minute, tonic clonic, then she falls asleep, then again 2 minutes to an hour later. Always during her night time sleep or even a nap. First day about 8 seizures, next day maybe nothing, then 3rd day 4 seizures, then the next day one or two seizures. I still believe it the hormones, but treating that is not working. I am so frustrated. I dont want to go down the surgery route again and the VNS doesnt seem to be all that successful, at least this is what Ive heard from others. Love our neuro, but these are his options along with suggest more meds., clinical trials. Anyone else have success with catamenial seizure control? I dont know what else to do at this point. Next week will be another seizure week and the holidays are coming up. She basically missed all of them last year with seizures. Heres a photo of my daughter. Shes a sweetheart.
Posted on: Wed, 12 Nov 2014 13:44:48 +0000
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