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Living with epilepsy - Introduce yourself & meet others
Epilepsy & Seizures | Last Active: Jun 29, 2023 | Replies (462)Comment receiving replies
Hi . My name is Mary and my granddaughter Talia has been in the hospital for 33 days now in a medically induced coma. She had a seizure about 8 years ago and she was giving medicine for it. She didn't have any more for about 4 years then she would have one every couple of months. But on July 29th she had a seizure and was taken to the emergency room at the hospital in our city. The hospital flew her to a major hospital in Albuquerque New Mexico where they said they wanted to stop the seizures. They put her into a medically-induced coma. Yesterday the doctor said that they have tried almost all medicines they could think of. They have two more that they want to try and if those don't work they will try electroshock therapy. If that doesn't work they said they were out of options they can't allow her to wake up because they say if she has a seizure it will damage her brain. If electric shock therapy does not work there's nothing else they can do. Please if there's someone that has a suggestion for my son on what he can do for his daughter please please let us know thank you.
Replies to "Hi . My name is Mary and my granddaughter Talia has been in the hospital for..."
Hello @mmaryemc,
I'm so very sorry to learn about your granddaughter. I'd like to bring @dawn_giacabazi @sall @kerivb @12271997 @jakedduck1 @patrassi into this discussion. While your granddaughter's situation may be considerable different, I thought you'd like to meet other members who've faced some difficult decisions.
I'd sincerely encourage you to visit this webpage where you can view all the details about Mayo Clinic epilepsy care teams; The National Association of Epilepsy Centers rates all Mayo Clinic campuses as Level 4 epilepsy centers, providing the highest level of diagnosis and treatment options for people with epilepsy.
https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102
@mmaryemc, I realize how utterly terrifying this must be and that you're doing all that you can. We're here to help; please keep talking and sending any updates or any questions that the Connect community can help answer.
For one, is her Dr. a epilepsy specialist? If not you need one, 2ndly I’ve never heard of them putting anyone in a medical induced coma to stop seizures, there are lots of websites such as Epilepsy foundation, that may have answers or suggestions for you. Also how long did they try each med? Reason I ask is Some meds take weeks/months to get to the right level to stop them. I hope things turn out for your granddaughter.
Mary , I am so sorry to hear about your granddaughter. I have heard that Mayo Clinic has some online appointments , Mayo doctors may talk to your doctors to give some instructions or help. Call Mayo office tomorrow morning to see it could happen. I wish you and your family much love and hope.
Mary , I really hope this could help your family, call the appointment office 507 2849974 to ask for a video appointment. Maybe they could give you some ideas for her treatment.
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Is it too late for the Albuquerque doctors to communicate with the seizure doctors at Rochester Mayo Clinic? I know they may not work for the same boss, but I would check if any of the Albuquerque seizure doctors were from that Rochester Mayo Clinic and if whether Rochester and the Albuquerque Doctors maintain communication about seizure treatments, in any way. I just hear alot of good things about the Rochester Mayo Clinic on this feed for seizure treatments and it is probably already old news to you. Will be praying for Talia! I have a younger brother, Matt, of 28 years that has had about 10 Grand Mal seizures this year and the doctors had to switch him to Vimpat. He has had 2 more since the switch, so less now than before.