Weaning off levetiracetam (Keppra)

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Flynn's mum

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My son is coming up on two years since his last tonic clonic seizure. We would like to wean him off his levetiracetam to see if he will be seizure-free without drugs. We have the support of his neurologist for this. One thing I am really looking forward to is finding out whether the attention deficit he has had is related to the levetiracetam. The neuro has said "Look, your son has faulty wiring in his brain and that will be causing more than just seizures. Even if he outgrows the seizures, he will never outgrow the faulty wiring." I'm thinking how can this be true? Don't kids' brains rewire themselves all the time? So, does anyone have any experience of going off levetiracetam or just growing up and finding that attention and concentration improve?
 
I haven't been on Keppra, or been a kid with ADD, but I would urge you to look into neurofeedback as a treatment for your son's attention issues and/or seizures. It's been used as a treatment for both. The whole premise behind neurofeedback is that the brain CAN rewire itself -- in the case of nfb, through repeated brain "exercises". More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
Hi

My son is 5 and he has been diagnosed with ADHD and also is getting weaned off keppra, god it really brought the aggression out in him it was actually one of the worst side effects I have seen in meds. He has been advised to go off his meds at 0.5ml a week and it has been only a few days and already I have noticed behaviour changes.

The type of epilepsy that my son has( tuberose sclerosis complex) has a large incidence of behavioural problems and my son definately has that!!

I hope that helps :D
 
Thanks for your replies. I don't know if we would have any provider of neurofeedback here (Christchurch, New Zealand). There really isn't much support at all. But I will look into it.
It's reassuring to hear that some of what we've been dealing with may go away. Our son has also been quite aggressive although he has recently learned to keep his rage under control (at least at school). Our son takes a 250mg tablet twice a day (the liquid is not available here) so the weaning off process won't be as gradual as we might like. Still, even though it's a bit scary, I'm very excited that we might get our little boy back.
 
Flynn's mum

I have grown up with epilepsy as many others. Coming of keppra or any medication is not easy. Your son being aggressive could be a side effect, ever hear of keppra rage. I heard all the stories of what I can and cannot do, about not being able to keep up at school all the rest. The thing is all of us are different and the only way you will get a truthful answer is when he is completely of all medication. Just because you are on medication does not make you less intelligent, and I would say there are a few here who can prove that. So the faulty wiring bit is true to an extent children are resilient , like I said we are all different. Wait and see is all you can do I think.
 
flynn's mom, im weaning off of keppra right now is your son having any effects vomiting,extreme diziness?
 
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