Childhood Absence Epilepsy - Meds

[pennington0620]

Hello...I am new to this forum. My 7 year old daughter has absence epilepsy. She has had it for 1 1/2 years. We are currently trying our 8th medication - Zonegran. She has trouble sleeping - seems to be wired after taking it. She is still having seizures. She had two crying fits over the weekend.

Just looking to hear some other stories - maybe suggestions for help?

She has failed half of the meds due to side effects. Does anyone ever 'start over' on the meds after failing so many? Is it possible to change the med type - liquid to tablet maybe - has anyone seen that make a difference?

 

[epileric]

Welcome pennington0620

I've been on medications all my life and it's very rare to find one that has absolutely no side-effects.

How long has your daughter been on Zonegram? it can take a while for the body to adjust to a medication so that the side-effects subside.

Also, I moved your post to the foyer so that everyone can welcome you to the here.

 

[Nakamova]

Hi pennington0620, welcome to CWE!

I'm sorry to hear that you and your daughter have been riding the "medication merry-go-round". When I was on Zonegran it made me cranky, irritated my stomach, and made it hard for me to eat, so I didn't have a great experience on it.

Have you tried using a dietary approach to help control the seizures? There's been success using the ketogenic and modified Atkins diets. You can read about it here: http://www.hopkinschildrens.org/High-Fat-Diets-Effectively-Treat-Absence-Epilepsy.aspx

Best,
Nakamova

 

[hootie]

My son has absence seizures. He has been taking Depakote. It has decreased his seizures (but was still having them). As we increased his dose he started biting his nails, talked less, and then started having behavioral issues. His doc wants to switch to Topomax but I don't like what I am reading with the side effects (mental decline, etc) so I have decreased the Depakote but am afraid to add in the Topomax. My son is already developmentally delayed with autism.

I have decreased his carbs and stopped giving him potato in any form since both seem to cause increased seizures.

I wish I had some answers for you...I am looking for some myself.

 

[Dutch mom]

Did you kids try Ethymal or Zarontin (ethosuximide)? This med is prescribed most in my country for absence seizures.

http://www.nextbio.com/b/search/ov/Ethymal

 

[tase37]

Hi and sorry to hear that
My baby was on keppra but it didn't help so she was put on dilantin ( I think thats its name in English) luckily now at the moment we are med free but we shall see how long.. Hope you manage to get a good med for your child and I wish you and your family lots of luck!