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