Re: seizures help/ e

[Guest guest]

This is the max for them according to me... I think it's astronomically high but, our neuro insists you can go as high as needed as long as they don't get too tired or irritable.

I am at my wits end in trying to control these seizures. He recently lowered the zonegran and I am hoping he will take them off it and try another. I might talk to him about lamictal as that's what is working for Wyatt (Geri-Anne's son) and if Chelsea's are being controlled too, maybe it would be worth a try for us. I would also like to lower the Keppra back down as it obviously isn't doing piddly.

After the 1st of the year, we are going to try a modified Atkins diet. I just bought the book today and am going to read up about it. A doctor at s Hopkins is having luck with this diet and there's actually a Yahoo! group called Atkins4seizures with people who are currently on it. It's basically like the keto diet but, not as strict in that you don't have to weigh the food and can have more of a variety. They would be on 10g of carbs for at least the 1st 30 days. At this point, I am willing to try anything. I'll let you know how it goes. Dr. Whiteman has given us the go-ahead if we decide to go the diet route.

Lets hope 2005 provides better seizure control for all of us!

Kim - Mom to and Lindsey (3) Partial Complex I

Re: seizures help/ Dawn & kim

Dawn, Chelsea has been on Keppra for 2+ yrs as well. It has been a good drug for her with little side effects. She is on the highest dose for her weight, and had to recently start Lamictal as well, but her seizures are under good control.

I wasn't aware that any particular seizure type is associated with mito, I assumed any kind of seizures could happen. Since Chelsea has Rett's, this is probably moot, but she has had all kinds of seizures, including absence. She has a strong tendency toward convulsive seizures, but progressed to that point.

I hope Keppra works for Molly. What do her seizures look like?

They are on a total of 1500mg per day. (They weigh 30 pounds.)

Kim, this is the dose Chelsea is on, she weighs 60lbs, so 2wice as much as your kiddos. I was told this was the max dose for her weight and going higher was probably not going to do any better, so she was put on Lamictal. What have you been told is the max dose!

Thanks!

Sorry for such a late response, got behind on my mail, Like I do every Christmas!

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions.