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fbutterw20 (@fbutterw20)

Tonic upward stares occurring daily

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

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Hello @fbutterw20 and welcome to Mayo Connect

I'm so sorry to hear about your son's seizures. I would like to invite some other Members of the Epilepsy discussion group to comment on this like @jakedduck1 and @lsittll.

Have you sought a second opinion for him? If not, Mayo Clinic has an excellent department for epilepsy/seizures. If you would like to get an appointment for him, here is the number, http://mayocl.in/1mtmR63.

I suppose the medical team at Mass General has tried different meds?

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Replies to "Hello @fbutterw20 and welcome to Mayo Connect I'm so sorry to hear about your son's seizures...."

He is on 5 different seizure meds now.
The staring episodes have destroyed his life.
Once he falls into a stare(usually late morning or early afternoon the rest of his day is gone.
Falling asleep is the only way he seems to be able to break the stare.
We live in Maine so unfortunately an appointment at Mayo Clinic would be hard to arrange.
With 2 VP shunts I doubt he could safely fly.
The neurosurgeon who has performed all of his operations so far is recommending as a last effort an Endoscopic 3rd Venticulostomy but has said that it may not better his situation and could further complicate his cognitive and speech deficits.