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Three daughter now have epilepsy

Mon, 08/08/2016 - 13:13
Just an update on my post of daughters with epilepsy Abbie had her first Tonic Clonic seizure in April so now all three girls have epilepsy. Abbie has had 3 eegs since then and all are abnormal and we are having trouble getting her seizures under control. we tried to keep eveything as normal as possible for the girls with their activies but summer has proven very difficult. Abbie is on 2500 Keppra and Lamotrigine. They all really wanted to continue to swim on the swim team and we asked their doctor and was okayed as long as they were watched carefully. Last Monday Abbie had a full out seizure while swimming and I had to dive into the pool and save her. We were lucky as I watch her very carefully and saw her stop and go under and she was only under for abot 15 seconds before I got her up. We got her out of the pool and she continued to seizure for about a minute. We took her to the ER to check for water in the lungs and she was fine, But no more swimming for now. She really wants to compete in gymnastics again this fall but we are worried about her having a seizure while up on the beam or the bars. The other thing that has us concerned is that her twin sister has not started puberty like she is and we are worried that her seizure control will be affected by this change. On the good note Ciara has been seizure free for about 6 months now with her meds and seems to be adjusting to her situation. She has been okayed to drive again and although I am scared she is doing very well and seems much happier to have her car back. When people hear about our kids having seizures they always say, " I can't believe you let them swim, tumble, drive, ect" How do you respond to this. Does anyone else have more than one child with epilepsy? They are referring us to the MAYO clinic for a second opinion but with all three of them it might be awhile before they can arrange all of the appointments. There is no epilepsy chapter in SD and I feel pretty isolated at times. Do you ever feel like there should be more answers to why they got this? I am hoping that when we get to MAYO some of the mystery about this will be revealed. Am I setting myself up for more disappointment? HAs anyone ever gone to MAYO and what should we expect? Audra

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