Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi , Cheer up, Dr Saneto is good, he's the first doc I have fully trusted in this 16 year ordeal. We had the nerve conduction studies as well, which were all normal. That is important to rule out primary muscle disease or central nervous system disorders. Some of those can be treated, or at least affect how to treat the mito. Every piece of information helps define what will help and what might hurt. The only test I didn't agree to was the "cognitive studies" and that was only after I found out it is a SOLID EIGHT HOURS of constant mental testing (think college SAT's all day without a break!) and I decided that would not be beneficial and would be torture for my kid. Having baseline information on all the other areas (and even this one if it wasn't such a grueling test) is helpful to tell them as you go along whether a treatment is helping or not. It also goes into the database to increase our general knowlege of all the mito diseases, which we badly need not just for your child but for all the ones who come after. Many people with MITO however do well on variations of the "cocktail" tailored to their specific complex deficiency. All these tests help fine tune the treatment. It's truly not frivolous. kj mom to De-Arbra age 16 Quote Link to comment Share on other sites More sharing options...
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