autism and epilepsy drugs

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hoovfour

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My husband and I are about at our wits end with epilepsy meds for our 19 year old son with autism and epilepsy. He has been on trileptal for 5 years and tolerated it well, but he still has about 2 to 3 seizures a month. In the past 15 months we have tried Vimpat, Depakote and Topamax. All gave him horrible side effects.He was aggressive, agitated and had rashes sometimes. We tried lamictal for about 6 months and it increased his seizures and his behavior was always so on and off. So now we are back to just trileptal. It seems every med we try is just a disaster. He is also taking a long time to withdraw from lamictal, he has good days and bad days. 15 months ago we didn't have any aggressive behaviors. We feel the constant going on and off meds has really messed him up. Which is worse , a seizure or freaking out from medication? I vote for freaking out from meds. Just wondering if anyone else hears about people with autism having difficulty with meds!
 
Which is worse, a seizure or freaking out from medication? I vote for freaking out from meds.
I wish you didn't have to choose! Does your son's neuro do any consulting with an autism specialist? Two specialists might be better than one when it comes to figuring what other treatment options are worth considering.

This article http://journal.frontiersin.org/article/10.3389/fpubh.2013.00031/full discusses and evaluates a wide variety of treatments for ASD+Epilepsy. Interestingly, it mentions Levetiracetam (keppra) as worth a try, even though that may seem counterintuitive given its reputation for mood-related side-effects.

The article also evaluates the current research on dietary approaches and supplements such as B12, zinc, magnesium + pyroxidine, l-carnosine and omega-3s. Some seem promising but await additional clinical studies to confirm how beneficial they may be.

I hope this helps -- it may give you some ideas to discuss with your son's neuro when considering next steps.
 
thanks for the info! I will read up on this! We are definitely at our frustration level. We are seeing a new specialist next month!
 
Hey Hoovfour

I'm 21 and diagnosed with an ASD/high functioning autism, I've tried lamictal and clobazam and they did decrease seizures a lot but I've had so so many side effects.

Interestingly, considering what Nakamova suggested from the article, my neurologist is now planning to take me off the other two meds and but me on Keppra (I've heard its reputation too but as a person with ASD I'll keep you updated on how it affects me. Also is he on any other medication.
 
thanks , yes he has been on oxcarbazepine for about 5 years. It doesn't seem to cause any side effects, but it doesn't stop seizures either. He has had so much trouble with the other medications. He is very sensitive to meds anyway and I think many people with autism are. Let me know how Keppra goes. Thanks
 
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