Guest guest Posted November 20, 2006 Report Share Posted November 20, 2006 > > > > > > Carnitine is a test that can be done through any lab with a doc's > > perscription. > > > > In the end, the vitamin levels in plasma may not help guide > > treatment...although important for the underlying understanding of > > mechanism. Definitely if vit E is low, this is important to know. > > But it seems many levels are normal or high. I am also learning > that > > the value itself really doesn't mean anything if it is not > corrected > > to total serum lipid level...a high or low value could be totally > > normal or a normal value could be low...depending on the > cholesterol > > and phospholipid level. In addition I learned today that vitamin K > > levels in blood are also totally unreliable and don't reflect a > > deficiency etc. So kids using higher doses of vit E should > probably > > have periodic PT/PTT levels checked to monitor vitamin K. (This > is > > a theoretical risk...but still the only risk known with vit E). > I'm > > just opting to give extra vitamin K to avoid the problem > altogether. > > Of course anyone on blood thinners or coumadin should probably not > > be taking vit E...but that probably isn't any of our kids. > > > > If you are going to push for bloodwork...getting carnitine and > anti- > > gliadin antibodies (and going gluten-free if positive) is probably > > worth the fight. There are over 15 families who have reported low > > carnitine...carnitine deficiency is " rare " ...but doesn't seem to > be > > rare in our kids. - > > > > > > > Caludia, who would test for the carnitine deficiency? I have a > > son with Prader-Willi Syndrome, who is on growth hormone. If you > > know anything about the syndrome, their muscle tone is weak, due > to > > a poor production of gh. I have him on coq10, which seems to help > > him, and then the NNaturals cod liver oil. Although I did see > > improvement in his speech clarity when I put him on vitamin e, I > am > > nervous to keep him on it due to his high body fat content. I > can't > > get any of his current docs to test him or his brother ( " normal " > > ADD/gifted and does great on vitamin E) for any vitamin > > deficiencies. Maybe I will end up having to go to a naturopath, > who > > doesn't take insurance of course, but I keep thinking that it > would > > help to know all of this. I have just been diagnosed with > > fibromyalgia, and know that gluten free, mostly milk free helps my > > strength, as well as both the boys. > > > > > > Maybe this it too many questions all in one clump, but the more > I > > understand, the better our life will be because we all feel > better. > > > > > > Thanks, Kim K. > > > > > > Quote Link to comment Share on other sites More sharing options...
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