1. < Epilepsy & Seizures

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.

Chris Gautier OR Santosha | @santosha | Aug 17, 2022

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.
Santosha

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wowsmurf | @wowsmurf | Jan 26, 2023

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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happyccl8 | @happyccl8 | May 20 8:47am

Eses mom here. My son has been on zonisamide, lamictal, Vimpat, Onfi, clonidine, clonazepan , steroids , ivig, and amantadine, cbd/ thc .

Iv steroids amazing for behavior
Ivig - great for the spikes
Amantadine amazing for cognition/ academics /memory -also great for spikes

It took many years to control things and his iq dropped from 85 to 51 - so permanent brain damage

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Chris Gautier OR Santosha | @santosha | May 21 5:36am
In reply to @wowsmurf "My son has ESES. He was put on prednisone for 6 months and it has helped..." + (show)
@wowsmurf

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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Hi @wowsmurf
I can not tell you if there are any behavioral issues and cognitive issues with ESES specifically. But for sure, there are those issues in epilepsy. The AEDs can also bring changes in behavior. Keppra is for example well known for the Keppra rage side-effect.
Chris (@santosha)

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1 reply
happyccl8 | @happyccl8 | May 22 10:33am
In reply to @santosha "Hi @wowsmurf I can not tell you if there are any behavioral issues and cognitive issues..." + (show)
@santosha

Hi @wowsmurf
I can not tell you if there are any behavioral issues and cognitive issues with ESES specifically. But for sure, there are those issues in epilepsy. The AEDs can also bring changes in behavior. Keppra is for example well known for the Keppra rage side-effect.
Chris (@santosha)

Jump to this post

It can definitely cause behavior and cognitive decline and motor skills as well. It’s devastating. My neuro from ucsf says that all the neuros back at Oakland kaiser are all sitting and wondering what my son would have been like had they caught and treated this as soon as possible. Iq from 85 to 51 is just devastating.

Be aggressive with ESES don’t wait for decline to happen! Start treatment as soon as they see interictal spikes during Nonrem sleep. Get baseline neuro psych testing asap to monitor decline. Dont let the say it’s just autism either. Autism does not regress at 6 years old!

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