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[Sky]

Hello.

I am new to the forum. I'm not happy about it of course. My 7 year old son who is high functioning autistic was diagnosed with complex partial seizures. He's had about 3 in his 7 years of life. Apparently he's having a bunch while asleep. So a week ago the neuro started him on keppra and behaviors ensued - not good - more agressive. I have him on B6. She wants to change it to trileptal. So I started that today and weanning the keppra off within 9 days as instructed. They all suck and have horrible side effects - I wonder about the side effects we just don't know about. Everybody reacts differently but man I wish I could just chuck them all and do it naturally without side effects. I know I'm poisoning my son but made to feel like I have no choice because the alternative is not successful in stopping the seizures. And the diet, not good for the body either. Sigh! I just don't know what to do. Maria

 

[Nakamova]

Hi Sky, welcome to CWE!

I'm sorry to hear about the struggles your son is having with the meds. There really is just a lot of trial (and error) to find the right med, and even then they function as fairly blunt insruments. It sounds like you've ruled out the ketogenic diet, but have you considered the Modified Atkins Diet (MAD)? It's a little bit easier to follow and not quite as hard on the body. Another treatment option is Neurofeedback. Unfortunately it's not usually covered by insurance, but it has shown a lot of promise anecdotally.

I hope the trileptal does the trick. Keep us posted.

Best,
Nakamova

 

[hootie]

Sky,

I am in the same boat as you--12 year old son with autism and absence seizures...and I hate AEDs. Right now the medication is a necessary evil but I am trying to find different ways to reduce or eliminate the depakote.

As we "speak" my son is doing another video EEG at home. I think the neuro wants to show there is still seizure activity even though I am not seeing seizures. We tried increasing depakote some time earlier in the year and his behavior got crazy and we had to decrease again. I think she wants to combine drugs but I am not too excited about doing this.

My son did neurofeedback and his seizure activity got better "on paper" but it was very stressful to continue as he was not always a willing participant.

I would love to try the MAD diet but due to his multiple food allergies I am not sure how we would work it. Eggs and nuts are a big part of the diet and he is allergic to these plus many other things. Anyway...maybe you could try this diet as it is supposed to be easier than KETO and your son would not need to be on it *forever*.

I hope you find some natural things that help reduce/eliminate your son's seizures so you can decrease/eliminate the medication. Taking potato out of my son's diet helped a good amount. Not sure if it is food allergy related or carb related...but glad it has helped somewhat.

Let me know if you find anything helpful.

 

[survivor]

Best of luck, Sky!! Have patience and keep posting, u will get good information here. The little baby is suffering, give him all he wants............................ love, care, emotional support, laughter and all thats possible. We are all with U!

 

[Endless]

Hi, Maria,

Welcome to the forum!

I'm so sorry to hear about the medication struggles your son is going through. Medications are so hard to get right. It takes a master "cook" to get just the right "recipie." Hopefully your neurologist is doing a good job for you.

Hang in there.

There are lots of moms in here with children with epilepsy. I'm sure they'll chime in soon.