About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (11)

Tue, Apr 2 10:58am · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

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!?

Nov 25, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

I'm sorry to say the doctor says her seizures have not stopped. They've given her so much medication it has kept her in a coma. They say they had to to keep her from brain damage. Now they're afraid she may not wake up. The medication affected her liver terribly so she came close to liver failure. They say she's a special case they've never seen anything like before. I tried desperately to get them to contact the Mayo Clinic in Rochester but the doctor said he has his own specialist he's been in contact with. I've come so close to being defeated and broken and I can't bear to see my little granddaughter like that. But I refuse to give up hope. With prayers from kind people like you I know she can come back. Thank you so much for caring.

Oct 15, 2018 · Seizures and surgery in Epilepsy & Seizures

Thank you so much. It's very nice to have someone actually seem to hear me and have some advice. One of my posts was posted as "My grandaughters seizures. HELP!!" I posted it on September 17. My granddaughter is 14 years old . The Drs want to actually remove a golf ball-sized PART of her brain. It's not a tumor they just think that's the part of the brain where the seizures are coming from. I'mm having a hard time even conceiving this idea.

Oct 15, 2018 · Seizures and surgery in Epilepsy & Seizures

I'm sorry. I thought I was starting a different conversation. I'm not quite sure how to do this.

Oct 15, 2018 · Seizures and surgery in Epilepsy & Seizures

Now that my granddaughter has been close to 80 days in a coma, with maybe over 30 different medicines, the ketonic diet and shock therapy done the Drs. next step is brain surgery. They want to remove a "golf ball sized" part of her brain to stop the seizures. They aren't interested in trying to help her control or live with the seziures. Any views on this surgery?

Sep 25, 2018 · My granddaughter's seizures. HELP!! in Epilepsy & Seizures

My granddaughters doctors have tried phenobarbotol, lorazaepam, as well as quite a few other drugs. Thank you so much for the encouraging words. I have been on an emotional rollercoaster. I am at a loss and I'm sorry but I have found myself blaming people for incorrect or bad diagnosis'. Your comments have really helped me. Thank you again.

Sep 25, 2018 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

About a month ago I had been told to ask my grandaughters doctor to have an online consultation with a mayo clinic seziure specialist. How would I go about setting that up? My granddaughter is still in a coma after 2 months while her doctor still tries to stop her seziures.

Sep 17, 2018 · My granddaughter's seizures. HELP!! in Epilepsy & Seizures

HELP! I am at a loss as to what I should do about my granddaughter. 8 weeks ago I joined this group because my granddaughter was put into a medically-induced coma while the doctors tried to control her seizures. Now 8 weeks later she is still in a coma and the doctors have tried approximately 20 different medicines at different doses. This past week they started electroshock therapy. All they are doing is trying to stop the seizures. They said they can’t let her wake up. It could cause brain damage. They aren’t trying to find out what is causing the seizures or where they are coming from. My son cannot afford to transfer her anywhere else. His insurance won’t cover any of that. I am going crazy wondering what the doctors at UNM Hospital in Albuquerque New Mexico are going to want to try next.