Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 It is quite possible that the vitamin E is working as an antioxidant, I have seen many parents post with benefits from POM juice(very high ORAC value) Vitamin E has an ORAC value of 1700, the body requires at least 500 per day to keep oxidation to a minimum. That is why such quick regressions are seen when it is stopped. It is working as an antioxidant. Any high orac content substance will give the same benefits. > > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2006 Report Share Posted December 20, 2006 The blood test for many vitamins is not necessarily accurate because it does not reflect levels in certain organs...like the brain. My son also had normal levels that did not change at all even with high dose vit E supplements. I'm not sure why that is...but HE certainly changed with supplements. Maybe it is just being consumed very rapidly, and these children need supraphysiological levels for normal brain function? Consider giving it a try. Its a benign intervention...and if you see benefit - great. If not, nothing lost. But we have gotten a clinical cure with vit E + omega 3 supplements...and no obvious vit E deficiency identified by blood test, although a severe carnitine deficiency was identified. > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2006 Report Share Posted December 21, 2006 It is quite possible that the vitamin E is working as an antioxidant, I have seen many parents post with benefits from POM juice(very high ORAC value) Vitamin E has an ORAC value of 1700, the body requires at least 500 per day to keep oxidation to a minimum. That is why such quick regressions are seen when it is stopped. It is working as an antioxidant. Any high orac content substance will give the same benefits. > > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Did they check carnitine level as well? > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Did they check carnitine level as well? > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Hi , Thanks for responding. I thought they did check carnitine, but the only thing I see in her records is Acylcarnitine Spot Card, which was normal twice, I know from the group that there are other types of carnitine that should also be tested, ester, free, and something else I can't remember at the moment. Should we request they test for that as well when we have the more extensive chromosomal analysis done (hopefully very soon, we are just waiting for the insurance pre-approval.) Here is something else I am struggling with. Pretty much all of her symptoms can be explained between the descriptions of vitamin E deficiency and Essential Fatty Acid Deficiency. But we have not found any conclusive evidence that that is the issue, and maybe never will. If she does have a fatty acid disorder, can giving fish oils and omegas cause harm? Can they build up in the system if she can not process them? We have come so far in searching for an underlying cause, and so far have come up with nothing. I know we may never find anything, I have also heard that if we supplement it can sku test results. Does that mean we either have to decide to treat with supplements, OR continue testing? At what point do we give up on an underlying diagnosis and just supplement, We have already put her through so much, but the doctors keep pushing us to go farther. I feel like we are losing precious time. It has already been a year and a half of searching........... Thanks for any input you can give. Wendi [ ] Re: Vitamin E normal? Did they check carnitine level as well? > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 > Did they check carnitine level as well? > > > Hi - > > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some > learning difficulties. At my request, they tested her for Celiac, > Vitamin E deficiency, and Lyme (we live in the Northeast and in the > woods, so Lyme is very prevelant), all came back normal. I was > really surprised about the Vitamin E. She has poor balance and > movement issues and severly dry skin. She sounds exactly like the > symptoms of Vitamin E deficiency. Is it possible she has issues with > vitamin E even if she tests as normal? Have other parents who have > had success with Vitamin E supplements tested within normal levels > without supplementation? Is the test for Vitamin E levels a good > test for whether supplementation is needed? > > > > They also had suspected her for a fatty acid oxidation disorder, > but so far all of the tests have come back as normal. Can't seem to > pin point anything wrong. We are waiting on a more extensive > chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 Hi , Thanks for responding. I thought they did check carnitine, but the only thing I see in her records is Acylcarnitine Spot Card, which was normal twice, I know from the group that there are other types of carnitine that should also be tested, ester, free, and something else I can't remember at the moment. Should we request they test for that as well when we have the more extensive chromosomal analysis done (hopefully very soon, we are just waiting for the insurance pre-approval.) Here is something else I am struggling with. Pretty much all of her symptoms can be explained between the descriptions of vitamin E deficiency and Essential Fatty Acid Deficiency. But we have not found any conclusive evidence that that is the issue, and maybe never will. If she does have a fatty acid disorder, can giving fish oils and omegas cause harm? Can they build up in the system if she can not process them? We have come so far in searching for an underlying cause, and so far have come up with nothing. I know we may never find anything, I have also heard that if we supplement it can sku test results. Does that mean we either have to decide to treat with supplements, OR continue testing? At what point do we give up on an underlying diagnosis and just supplement, We have already put her through so much, but the doctors keep pushing us to go farther. I feel like we are losing precious time. It has already been a year and a half of searching........... Thanks for any input you can give. Wendi [ ] Re: Vitamin E normal? Did they check carnitine level as well? > Hi - > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some learning difficulties. At my request, they tested her for Celiac, Vitamin E deficiency, and Lyme (we live in the Northeast and in the woods, so Lyme is very prevelant), all came back normal. I was really surprised about the Vitamin E. She has poor balance and movement issues and severly dry skin. She sounds exactly like the symptoms of Vitamin E deficiency. Is it possible she has issues with vitamin E even if she tests as normal? Have other parents who have had success with Vitamin E supplements tested within normal levels without supplementation? Is the test for Vitamin E levels a good test for whether supplementation is needed? > > They also had suspected her for a fatty acid oxidation disorder, but so far all of the tests have come back as normal. Can't seem to pin point anything wrong. We are waiting on a more extensive chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2006 Report Share Posted December 27, 2006 > Did they check carnitine level as well? > > > Hi - > > My 6.5 yr old daughter has global dyspraxia, hypotonia, and some > learning difficulties. At my request, they tested her for Celiac, > Vitamin E deficiency, and Lyme (we live in the Northeast and in the > woods, so Lyme is very prevelant), all came back normal. I was > really surprised about the Vitamin E. She has poor balance and > movement issues and severly dry skin. She sounds exactly like the > symptoms of Vitamin E deficiency. Is it possible she has issues with > vitamin E even if she tests as normal? Have other parents who have > had success with Vitamin E supplements tested within normal levels > without supplementation? Is the test for Vitamin E levels a good > test for whether supplementation is needed? > > > > They also had suspected her for a fatty acid oxidation disorder, > but so far all of the tests have come back as normal. Can't seem to > pin point anything wrong. We are waiting on a more extensive > chromosomal analysis. I'll keep you posted on how that goes. > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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