← Return to "Parenting" a 23YO daughter with grand mal seizures

Discussion
Comment receiving replies
@adoptivemother

Oh wow. You have lived through a lot. I really appreciate the photos and information on the MedicAlert-that is the one I was investigating and maybe it will help her to see other people use them and what it looks like. Do you drive or is the seat belt holder for use as a passenger? If you drive, how do you manage that? We had been letting her drive because her neurologist wrote a letter stating she could and it had been so long since a seizure. Thank goodness she was at home last week when she had three.

Her doctor had prescribed a time release med but insurance declined it. I just don't understand how insurance companies essentially replaced doctors in decision making.

Thank you for taking the time to respond. This is a scary path to travel and no one else in my circle has any understanding of it.

Heather

Jump to this post


Replies to "Oh wow. You have lived through a lot. I really appreciate the photos and information on..."

Insurance companies in terms of cost aka greed have unimaginable power. I have had a medicare advantage plan. On 1/1/25 I will be in origional medicare. I paid for my own prescriptions because they have denied to send me my medications including my anti epileptic drug..Take all precautions necessary. They no longer care.

@adoptivemother
Yes, I drive. I have had a couple of incidents while driving. I had a few absence seizures that happened while stopped at red lights. My foot came off the brake and I barely tapped the car in front of me. No damage. Once I turned left leaving the dentist's office, had an absence, and nearly hit a car. Went directly to my neurologist and he increased one of my meds and solved the problem, at least so far.
But you never know when, what type, or the severity of a seizure. My brother's first seizure happened while driving to a garden store in a small sports car and he hit head-on with a station wagon. He crushed both his legs and severed his femoral arteries in both legs. He's now in a wheelchair. So anything can happen to anyone at any time, epilepsy or not.
I know many people with seizures and those who take some risks seem to be happier. I have known some who live very sheltered lives a couple who refuse to ever leave their homes. One is ashamed and embarrassed and doesn't want anyone to see him have a seizure.
People are still ignorant and the Epilepsy stigma is going strong but better than it was in the 60s, 70s & 80si but you have to be strong and let cruel comments roll off your back. Sure it still hurts being told “you belong in a circus” or having religious people saying you're “possessed by the devil” or “your the devil” and wanting you to come to a séance and countless other awful things, not being hired or fired because of seizures. Yes, it's illegal but don't think it doesn't happen. Sometimes you just have to deal with whatever hand life deals you, difficult as it may be.
Take care,
Jake