anyone who has had epilepsy since a young child how have u or family felt?

Question

I have resently been told my 3 yr old daughter will probilly never be seizure free that they can only make her comfortable and minimize how many she has.

she has parial complex seizures and absance she has now developed drop attacks has had 3 grand mals she is on Tegretol and Clobazam recently she has only been seizure free 5 days she seizured on 20,21,22,23,24,25,26, 31,2

Answer 1

I've had it for 20 years. Since I was 17. Our family went through alot of adjusting and yeah I'm not going to tell you its going to be easy....but I will tell you this...love her. Love her like mad and don't ever make her feel like she is different or unique. The best medicine my family gave me was making me feel like I was just like the rest of the world. I don't drive and believe me I'm NOT seizure free. I average about 2 a year now. I take Epival and I find it ALOT better than Tegretol. I'm not as tired and I feel more aware. I found Tegretol made me feel like I was walking around in a haze all the time. I'm married with kids and a carrier I love and she will live her life too mom...if you can master letting her when she's older. I wish you and your family every good wish and bless you. Good Luck!

Answer 2

I have had it since age 7. I had a brain abcess then, and the doctors told my parents there was no way I would survive, so I feel pretty fortunate to have just gotten away with epilepsy.

You didn't say what type of seizures your daughter has, or how often. I have grand mals, but only monthly or so. There are many wonderful medicines out there which can control the seizures, but she will be on them for life. I assume they're starting her out with Dilantin Infatabs. They may have to change her medicine several times before they get a combination which works best for her. If they cannot control the seizures, and they are extremely frequent, as in several times per day, they may even want to talk to you about surgery. It can be very risky, though, especially if she's still young by then, and still has a chance of outgrowing them (she still could--it happens fairly often, especially with petit mal or temporal lobe seizures).

I was lucky when I was younger--As long as I took my medicine, I only had seizures every few years. They've only started getting worse in the past few years. But my family was always very supportive. She will need all the help she can get, because there will be kids who make fun of her. But emphasize that she can do anything she wants, and she will be fine. It's true--I am a lawyer!

Answer 3

I've had since I was 5, got worse at 18, found out what I had, always denied it. After a couple of years tried to accept it, I do now, but having it makes me feel bad, and it'll be that way probably for the rest of my life.