ESES Treatment and Providers

Posted by tbjork @tbjork, Aug 16, 2022

Anyone have any luck with difficult to treat ESES in children? We have been battling with 14+ different meds over the last 5 years and are at a breaking point. We may have found the cause to be low-grade glioma, but have to do much more testing to confirm.

Would like to get any info others may have found on the best treatment options and providers with experience in this rare form of epilepsy.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Hi @tbjork
I do not have experience in his rare form of epilepsy. But since medications are not being very helpful, unfortunately, have you tried Keto Diet? By the way, there is a great movie with Meryl Streep on the Keto Diet called "First, Do No Harm". It is available on YouTube. Worth watching this movie!!! Have you also explored the possibility to treat your child with CBD (medical cannabis)? I myself have refractory epilepsy and treat myself with gluten-free diet and CBD.


My son has ESES. He was put on prednisone for 6 months and it has helped tremendously. But so many bad side affects. Blood pressure. Weight gain etc. but now we are weaning off not sure what will happen. We were told about this IVIG could help and be our next step Do you find that there has been behavioral issues and cognitive with this disease?

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