Shortly after birth, a friend’s grandson had multiple seizures

Posted by mphaddican @mphaddican, Jun 4 7:19pm

The device limited the seizures but did not stop them completely. His behavior has deteriorated since the device was installed.
Do you know of any physician or facility that has the research or protocols to deal with this. The child is around 7 yrs of age.
Thank you
M

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

Chris Gautier, Volunteer Mentor | @santosha | Jun 8 6:23am

Hi @mphaddican
How heartbreaking for this child and his family! Thank you for reaching out on their behalf.
For a child this age with refractory epilepsy, a comprehensive evaluation at a Level 4 epilepsy center — the highest designation — would be the most important next step if that hasn't happened yet. These centers have multidisciplinary teams experienced with complex pediatric cases and can evaluate whether other options — dietary therapies like the ketogenic diet, further surgical evaluation, or newer medications — might be appropriate.
You mention a device has been implanted — do you know whether it's a VNS, RNS, or DBS (the three types of neurostimulation devices used in epilepsy)? And do you know if your friend’s grandson is being cared for by a pediatric epilepsy specialist or a general neurologist?
I'm also tagging some members of our group — @ebrown78 @happyrivers9 @laurabeck — mothers with their own journeys supporting young children with epilepsy.
Wishing this little boy and his family strength and good answers. 🙏
Chris

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