Reply to Please share your experience with pediatric epilepsy

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[quote=Anonymous]My kid started having seizures at 5 months and was ultimately diagnosed with a rare and catastrophic form of epilepsy. We did genetic testing - that should be standard once you’ve had two seizures for unknown reasons. Medication for epilepsy is tricky. There are tons of anti-epileptic medications and finding the right medication for you is a matter of trial and error. The genetic testing results may indicate certain medications are better or worse. In our case, the first medication we tried, while a common first line medication was contraindicated for my kid’s specific genetic mutation - it was actually causing more seizures.

Re providers, we went through many ER hospitalizations for seizures in the early days. I would generally discard any advice you get while in the ER or if admitted to the hospital. You are going to get advice from a lot of inexperienced fellows who think they’re making a difference if they propose a new and different medication to try. We do like individual practitioners - we’ve also see Dr. Schreiber and also think he’s excellent. We worked with Dr Kossoff at Johns Hopkins specifically for keto and love him and his team, but I don’t know if he sees patients who aren’t doing keto. If you ever do pursue keto, absolutely do not do it through Childrens. In general, though there are strong doctors there, but it’s an administrative nightmare. We try to avoid Children’s at all costs.[/quote]

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