13-year-old daughter with refractory epilepsy
Hello, my 13-year-old daughter was diagnosed with epilepsy at age 7. She had an explosive onset with 3 episodes of status epileptus in less than 2 months. She had close to 1000 seizures over 8 months and failed several meds. The seizures completely stopped after 8 months and were gone for years. She began with absences a little over 2 years later, then myoclonic jerks for about a year only on and off and now tonic clonic seizures several days a week. She is again refractory to meds, had a clean WES, WGS and MRI. She is a mystery that we need solved. We are looking for the best place to bring her and are unsure if Jacksonville would be a good fit or if she should go to Rochester. Any advice is appreciated.
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