Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 Don't really know that much about them. Very few people do. Certainly a low carnitine level makes one worry about a mitochondrial disorder...and someday it may turn out that it plays a role in apraxia...but we just don't know yet. The evaluation we got at Packard Children's Hospital by someone who specializes in those sort of rare disorders...suggests that is not what is going on. But there are cocktails of antioxidants that are helpful for mito disorders...and we are already giving what some would consider a partial mito cocktail with vitamin E, C and carnitine. Co-enzyme Q and lipoic acid were other ingredients to a mito antioxidant cocktail. I haven't gotten around to adding anything else, since I read a few articles that dissuaded me from starting co-enzyme Q (but I haven't really researched it closesly, so concerns may be totally unfounded). But there are other causes of a carnitine deficiency as well. So many of our kids have gut issues, food allergies and in particular a wheat allergy (with a pos antigliadin antibody)...that malabsorption despite sufficient amounts in the diet may play a role. It seems like several mechanisms important to proper fatty acid metabolism and normal cell membrane integrity are abnormal in apraxia. Somehow these pathways are linked. Re: hypothyroid...celiac disease is also associated with hypothyroid (as well as diabetes). Hopefully you and your kids have been screened for this as well. - > , > > thanks for all your excellent posts. > > I was wondering if you have any understanding of mitochondrial > disorders which can be evidenced by low carnitine readings in blood > work. I have also been researching and noticed that muscle and > fatigue disorders such as chronic fatique and fibromayalgia fall > under the realm of mitochondrial disorders. > > I have been saying for quite some time that I think strong sensory > integration disorders manifest themselves as fibromayalgia/chronic > fatique syndrome in older teens and adults. Basically I believe that > fibro/cfids result from a lifetime of strong sensory issues not being > treated. (whether the cause of the disorders are meatabolic and/or > neurologic, etc.,) > Through nutritional issues and attacking strong chemical sensitivity > issues I have all but gotten the fibro and chronic fatique out of my > life. I have used a lot of the same treatments and a few more > natural ones that you are recommending for our apraxic/sensory kids. > > Do you have any thoughts on this? > > Also, have you looked into the effects of fluoride toxicity. This is > another thing I have tried to eradicate as much as possible from my > life (although it is in all water supplies - thus most items you > purchase in stores are made with fluoridated water.) > > Three of my kids and I have all been diagnosed with hypo- thyroidism. > This is, I believe, largely due to fluoride overload. I have > material on the topic if you would like it. > > A key way to spot hypothyroidism without the lab data (which is often > deemed inaccurate - can provide studies on that as well) is low body > temp. My older son never had a temperature higher than 95 degrees. > Who knew? You only go to the doctor when you are sick and then his > would be around normal to 99 degrees. > > My sons neurologist strongly b4elieves that treatment of his hypo- > thyroidism was a greater and more urgent need than taking seizure > meds to avoid seizure activity. > > I emailed you off list, but perhaps you thought it was spam. > > thanks, > brigett > Quote Link to comment Share on other sites More sharing options...
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