I have to ask this and ask for help. I'm a father of a child with seizures that she has had when she was 3. Now she is getting older and I am So afraid for her future.
There have been time she is doing great then hits a wall and back to the beginning.
For the parents that are older how do you cope with the feeling of the unknown?
What happens when I get older and what will happen to her. She is an only child?
Her mother and I are divorced.
I have a 6 year old with epilepsy and a 3 year old. This sounds a lot like my son. We have potty trained him 4+ times, behavior therapy etc. And every time he has a siezure he has a regression. This is not uncommon. Have you had genetic testing?
My son has the SCN1A genetic mutation (Dravets syndrome) which in a lot of cases can mimic autism or accompany it. No matter if the epilepsy panel comes back with or without any genetic mutation they should recommend the ADOS anyway to distinguish whether this is a result of brain damage or autism. My son has Dravets syndrome, autism, and dysphagia. It's hard as an epilepsy parent. It robs you of sleep and joy just worrying about what can happen to your child.
Mental health services for my son have been an enormous help. And so have the doctors in approving special equipment and getting the services necessary to fit his needs, like nursing services.
Keep asking questions and talking to people. There is so much help out there people are unaware of. I've been away from his father for 3 years and had to do it on my own. So stay strong dad! You got this.💪
Well its good when people get seizures young because they most of the time grow out of it, but i can tell you from how i was i ended up getting my seizures when i was 5 im 22 right now i did very good in elementary and middle school i was a straight a student of course i ended up going on pills but once i hit high school i was too stressed in jr. Year. So i ended up going to be tutored at my house i graduated, but i forgot to let you know when i was in middle school my mom looked for the best hospitals known to take care of seizures so i ended up at boston children's
@A MyEpilepsyTeam Member
Does she have an IEP??
Just asking because I was able to put my son in a special school that is trained to handle his medical and mental needs. There are schools for kids with medical, emotional, or both medical and emotional needs that have services such as PT/OT, Speech, and on-site social workers to help the patients families when needed.
If she doesn't have an IEP, talk to the doctors, mental health services coordinators, whoever you can. They can help advocate and work with the school district to find the right place for your child. Also if you don't know the laws and you feel like they are doing enough there are legal advocacy services out there to speak on your behalf and get the school services for your child that she deserves.
Coping with the feeling of the unknown is tough on a parent, believe me, my mom still worries about me and I’m nearly 50!
You need to have a care plan that can be shared from household to household to ensure consistency, happiness and the least amount of stress on your child. Ultimately, it’s your daughter that matters, not what the parents think about one another. I’m going through the same thing but my daughter is Type 1 diabetic. She’ll stay with me until her dad learns more about her condition and I feel comfortable that he can handle an emergency. I think everyone can relate to hitting a wall, adolescence was when my seizures worsened. As for her future, only time will tell. If it helps any I managed to receive two university degrees, have two kids, and work full-time even though I have tonic clonic epilepsy. Good luck, I’m rooting for you🙂
Well, I began at 13. My Father was always a strong Man until He saw Me have a seizure and will cry. He was a NYFM and retired now. He felt it was because of Him I started having seizures (it wasn't). I got older and married but My first Husband wanted a divorce. I moved in with My Parents. Then They got a divorce. I was there all the time 😱. I had seizures! It was always My Parents with marital issue, not Me!