New Here!

My daughter is 5 and was Dx in November of last year. She is doing okay, with some days being worse than others. Currently she takes 750 mg of Depakote and 250 mg of Zerontin daily. She only has a couple seizures a week now, which is much better than the 10 a day at first.

At this moment I am feeling sad for her. The neds that she takes to make her life easier, make her soo tired. She can sleep for 12 1/2 hours at night and have trouble getting through 3 hours of school. I am just unsure of whta to do. According to her Dr. (she is seeing an adult neurologist, because the closet pediatric dr. is 60 miles away) what they are doing is taking medication meant for adults and lowering then to her weight. So to me that is his way of saying "we are experimenting with your child" Great, but i really have no other option.

Thanks for reading!!

Thanks for the replies. I really would love to do anything possible to help her, as any parent would. The only problem with traveling the 60 miles, is I can't drive. So my options are whatever is close enough by bus or taxi. Her Dr. suggested a study in Madison (WI), which is great. I guess they provide transportaion down there, but I don't know if that is for the patient and a parent only or what the details are yet.

What took me by surprise is all the changing of meds that has to happen in order to get the right ones and the right dosage. I am not complaining, but to pay 40 bucks for a drug, have her take it for a week and then spend another 40 because that didn't work so well gets old. I just thought that this would be easier for some reason.