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YvonneE

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My grandson who is 3 was dianogsed with epilepsy a year ago March. He was 1st put on Depakote, stopped the grand mall but didn't stop the clonic jerk seizures. Added Keppra, no change and finally zone(something), still no change. They visit the doctor every 3 months and only speak with the nurse in between. They saught a second oppion in April from a doctor from the same hospital. He suggested ACTH steroid treatment. The seizures lessened after 5 days down to 3, but went back upafter a week. Upped the steroid for 4 days, had another EEG and there had been no change in brain activity. At first the doctor said the condition was ESSES, then Dooses syndrum, I feel like they are guessing, which I know they have to try different things, but what next.

He is delayed in mental development, he says very few words and we are testing him for Austism. Doesn't sleep well at night, wakes up with seizures.

Any help or advice would be appreciated. I feel so helpless. Wondering what others have done in the same situation.
 
Also Im not sure if anyone's told you but Autism is a very common co-disorder. There is a treatment called The Ketogenic Diet which can also help with autism I believe. It must be closely monitored and started in a hospital. Again an epilepsy unit would need to be in charge. There are many kids here using it.
 
Hi YvonneE

Has your doctor tried your grandson on vitamin B6?

http://ghr.nlm.nih.gov/condition/pyridoxine-dependent-epilepsy

http://ghr.nlm.nih.gov/condition/pyridoxal-5-phosphate-dependent-epilepsy

http://www.indianpediatrics.net/july2003/july-633-638.htm

http://faculty.washington.edu/sgospe/pyridoxine/index.html

As far as I know form the results of a genetic test I have an atypical form. I have used B6 to treat my RARE seizures (many different types) for over 40 years. I have never used any AEDs or special Diets to treat my seizures. I now use all the B vitamins, have done for approx. 20 years.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

Regards

Andy
 
He is currently being treated at Dartmuth in New Hamshire but how do you find a second opion at a different location. they are now in the process of getting him into a program with the Ketogenic diet, how difficult is it to adher to, and have the studies proven it to be successful? They have only tried the 3 drugs and haven't really adjusted the amounts much. I will check with the vitamin 6, see if they are using it. Thanks
 
Hi Yvonne, welcome to the forum. :hello:

When my wife took Depakote, it gave her such a brain fog that she couldn't think straight. Once she weaned off of it, her cognitive faculties normalized. :twocents:
 
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