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Living with epilepsy - Introduce yourself & meet others

Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)
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@mmaryemc

I started a discussion about 8 months ago about my granddaughter who was hospitalized because she was having seizures. She was put into a medically-induced coma and given countless numbers of medications. Now to this day. She is still in a coma. They can't wake her up and they don't know why. Today we were told that we need to find a long-term rehab facility for her. They're done and they don't know what to do for her next. They want her out of the hospital and we have to find a place for her ASAP. She's 14 years old and on a respirator. Anyone? Suggestions? Recommendations? Comments? ANYTHING!?

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Replies to "I started a discussion about 8 months ago about my granddaughter who was hospitalized because she..."
Leonard | @jakedduck1 | Apr 2, 2019

Hi Mary,
I’m very sorry to hear that. Have the seizures stopped yet. So she can’t breath on her own at all when they try and wake her? Have you tried to contact any other Epileptologists at other Epilepsy Centers? Perhaps joining some Epilepsy forums. No telling what others have been through. I’m trying to contact someone in London who is an Electroneurodiagnostic technologist, perhaps she will have some suggestions.
Below is a link on some research. It’s about glucose metabolism in the brain and may be able to predict if a person will wake up from a coma. The test to determine that is a specialized PET scan. Might be worth asking the doctors about.

https://www.cell.com/current-biology/fulltext/S0960-9822(16)30346-3

I would imagine the doctors informed you waking up can be a prolonged process, sometimes taking months.
Mayo Clinic’s Epilepsy Center is the top rated center in the U.S. It might be worth a phone call.
I can’t begin to imagine how terrible this ordeal has been on your family.
Hang in there,
Jake

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Lisa Lucier | @lisalucier | Feb 7, 2020

Hi, @mmaryemc - how are you doing? Wondering if you might provide an update on your granddaughter?

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