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Grandpa's Beautiful Granddaughter needs help
Wed, 07/31/2013 - 12:23My granddaughter has had seizures since she was six (6) years old. She just turned 16 and is heartbroken that she can't even think about getting her license or driving because she still has seizures at a rate of about one (1) per month. As she gets older her normal beautiful personality is being transformed into a beautiful girl who is beginning to think she is less than everyone else because she has gran mal seizures.
Her doctor is not talking about exploring surgery and is just treating her with medication at this point. He has increased her medication over the last year but her seizures are still not controlled.
I'm thinking about taking her to the Mayo clinic or to an expert for her to be checked to see if she is a candidate for surgery or just how to explore this option. She has had many tests to isolate the brain section that is the source of the problem but he is still not recommending surgery however he is not a surgeon.
If you have gone through the process to explore the surgery option, please send me any information you have so I can start the process for her.
Thank you,
A Concerned Grandpa
Re: Grandpa's Beautiful Granddaughter needs help
Submitted by idkwhat2do on Tue, 2013-09-10 - 01:58
Hello Concerned Grandpa.
If you want, I can give you my email address and I would be willing to help the poor girl. I've been there, in that situation. I'm a 19 year old guy and I'm living with Juvenile Myoclonic Epilepsy.
JME is a very "light" version of epilepsy. I've found a miracle drug, Keppra XR, that has completely done away with my symptoms. No jerks, no seizures.
When I was 16, I had one of my first grand mal's. I KNOW how it feels. I have BEEN there. I have cried for nights, I have decided death was easier than living with this crap, and my entire personality changed. What she needs to know, is she is NOT a changed person at all. If anything, JME has made me a more ambitious person.
Time heals everything. I would allow her to try any kind of experimental treatment out there. Epilepsy seems very subjective to every single person, and there's no telling what may stop her symptoms.
My doctor actually allowed me to drive because I was able to control my epilepsy so well. ANYTHING is possible. I hate to hear someone suffer. Epilepsy is a tough thing... But this community has been giving me hope since 2008, and I have every intention to give back.
I highly recommend the procedure. And if you want, you can give me her email address and I can help give her hope (hopefully). I talked to an older girl with JME when I was her age, and it really made everything different, to know that I'm not alone.
Good luck sir.
-Austin
Hello Concerned Grandpa.
If you want, I can give you my email address and I would be willing to help the poor girl. I've been there, in that situation. I'm a 19 year old guy and I'm living with Juvenile Myoclonic Epilepsy.
JME is a very "light" version of epilepsy. I've found a miracle drug, Keppra XR, that has completely done away with my symptoms. No jerks, no seizures.
When I was 16, I had one of my first grand mal's. I KNOW how it feels. I have BEEN there. I have cried for nights, I have decided death was easier than living with this crap, and my entire personality changed. What she needs to know, is she is NOT a changed person at all. If anything, JME has made me a more ambitious person.
Time heals everything. I would allow her to try any kind of experimental treatment out there. Epilepsy seems very subjective to every single person, and there's no telling what may stop her symptoms.
My doctor actually allowed me to drive because I was able to control my epilepsy so well. ANYTHING is possible. I hate to hear someone suffer. Epilepsy is a tough thing... But this community has been giving me hope since 2008, and I have every intention to give back.
I highly recommend the procedure. And if you want, you can give me her email address and I can help give her hope (hopefully). I talked to an older girl with JME when I was her age, and it really made everything different, to know that I'm not alone.
Good luck sir.
-Austin