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fbutterw20 (@fbutterw20)

Tonic upward stares occurring daily

Epilepsy & Seizures | Last Active: Jun 26, 2020 | Replies (8)

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@fbutterw20

Seizures are tonic clonic. Since fall seizures were on increase but following depth electrode procedure resection of some of brain scar tissue was done while addressing hemmorage and seizure frequency and intensity decreased.
I believe someone mentioned the PNES or I saw it in my online research.
Current thoughts are subclinical seizures remote possibility and more possibly oculogyric crisis.
Eyes do blink during episodes and gaze will shift periodically but always up. Additionally he is able to respond during most of the episode but slowly.
He has aphasia so responses are limited.
We have aligned ourselves with the Neurology group in Scarborough and have had our 1st in person meeting this week.
Continue to update Epileptologist in Boston at MGH however since she has treated our son since beginning of 2019.
Seizure meds are Depakote Keppra Vimpat Aptiom and Onfi.

Thank you for your interest in our Son’s situation.

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Replies to "Seizures are tonic clonic. Since fall seizures were on increase but following depth electrode procedure resection..."

Hello @fbutterw20,

From your post, it sounds as if you have already had an appointment at Scarborough. How did that go? Any new information?