Cartersmommy
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Hi everyone! I have a 5 month old who began having seizures when he was 2 months old and it's been a long road without many answers. At 2 months he began having clusters of spastic movements so he was admitted for testing. EEG was abnormal but infantile spasms was ruled out. MRI, blood tests, lumbar puncture all came back normal. They have tried phenobarbital, keppra, topamax and Ativan which all failed. His seizures have since changed to arm stiffening, eyes flickering and jerking now. He was admitted again after reaching 40-50 of these seizures per day. He is now taking onfi, vimpat and klonopin which has reduced his seizures to less than 10 per day. After 5 doctors, not one can give me any answers! They told me normally with cases this severe the baby does not progress, but he is happy and reaching his milestones so far with no developmental problems yet. One doctor says he could grow out of it and another says its not possible. Any info would be greatly appreciated. Experiences? Opinions? Referrals to specialist anywhere in the US? I am desperate for help at this point!
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