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Mitochondrial Myopathy

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Mitochondrial Myopathy

Posted by J on February 08, 2003 at 09:39:44:

Wondering what you know about this disorder. My 7 year old was diagnosed 6 years ago with it although at that time was not given a specific diagnosis. He is very high functioning and is just recently experiencing some muscle cramps, occassional elevated liver and muscle enzymes, etc etc etc. He is small in size and weight for the amount of food that he consumes. Currently on now vitamin therapies or cocktails. Trying to get into see Dr. Cohen in Cleveland who is supposed to be an expert in this area, but earliest we could get in is July. Wondering what recommendations you might have to help keep him healthy and strong in the mean time as the past months have brought many infections and a worn down boy.

Thanks,

J



Re: Mitochondrial Myopathy (Archive in human genome.)

Posted by Walt Stoll on February 09, 2003 at 09:00:09:

In Reply to: Mitochondrial Myopathy posted by J on February 08, 2003 at 09:39:44:

Hi, J.

Until a lot more is known about the genetic mechanism of this condition, the best we can do is to optimize the genetic structure he has left.

That means a swimming program every day (Can skip about 1-2 days a week if absolutely necessary until you see how much good this is going to do.) Starting a whole foods diet (to be sure the mitochondria have all the trace micronutrients needed for optimal function & repair, and finally supplementing with "Perfect Food" (green lable) from www.gardenoflifeusa.com If he cannnot swallow a tablet, it comes in a powder.

By the time you get to your expert, your child's symptoms will already be better than he is now.

Let us know what you learn. Your sharing your experiences will be an inspiration to others and help make this BB more helpful.

Walt

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