rakowskidp
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I apologize in advance if I'm unclear, but I'm having trouble figuring out exactly how to put this thought in words.
Our son is 14, severely autistic, non-verbal, incontinent, and recently diagnosed (December 2012) with epilepsy. He's currently on 2250 mg of keppra (750 mg in the morning, afternoon and at bedtime), and is still having tonic-clonics. He's had 6 so far, and on average, they're occurring once every 30 days (though the last two have been 20 and 27 days apart respectively). I believe he's also having absence or complex-partial seizures, but our neuro has been labelling these events as autism-related sensory-avoidance techniques, partially because of his experiece with treating other kids on the autism spectrum, and partially due to a 48-hour EEG that he reported as "normal" (though my research tends to indicate that this is practically meaningless).
I've read a lot about the promise of the ketogenic diet as well as neurofeedback, but just don't see how either of these plans would work with a child like mine. Are we limited to medication and/or surgical treatments?
My concerns with the diet are entirely related to his sensory issues. I simply don't think he'd eat the types of foods required on this diet.
And regarding neurofeedback, I don't think he has the intellectual capacity to perform whatever tasks are associated with it.
So, are we stuck with the medication game? Because quite frankly, I'm getting tired of simply increasing and/or switching medications and waiting 30-ish days to see if they've helped. It doesn't help that we have to evaluate his behavior to determine whether the medications are having undesireable side effects. If he could just TELL us what he's feelling, this would be at least a little bit easier.
So, what say ye?
Our son is 14, severely autistic, non-verbal, incontinent, and recently diagnosed (December 2012) with epilepsy. He's currently on 2250 mg of keppra (750 mg in the morning, afternoon and at bedtime), and is still having tonic-clonics. He's had 6 so far, and on average, they're occurring once every 30 days (though the last two have been 20 and 27 days apart respectively). I believe he's also having absence or complex-partial seizures, but our neuro has been labelling these events as autism-related sensory-avoidance techniques, partially because of his experiece with treating other kids on the autism spectrum, and partially due to a 48-hour EEG that he reported as "normal" (though my research tends to indicate that this is practically meaningless).
I've read a lot about the promise of the ketogenic diet as well as neurofeedback, but just don't see how either of these plans would work with a child like mine. Are we limited to medication and/or surgical treatments?
My concerns with the diet are entirely related to his sensory issues. I simply don't think he'd eat the types of foods required on this diet.
And regarding neurofeedback, I don't think he has the intellectual capacity to perform whatever tasks are associated with it.
So, are we stuck with the medication game? Because quite frankly, I'm getting tired of simply increasing and/or switching medications and waiting 30-ish days to see if they've helped. It doesn't help that we have to evaluate his behavior to determine whether the medications are having undesireable side effects. If he could just TELL us what he's feelling, this would be at least a little bit easier.
So, what say ye?