Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Hi , In a recent post you wrote: " Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose. " My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a " flat feet " request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate. So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? Any insight that you can provide on this would be appreciated. Thanks and regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 If your child is at all verbal,the pain involved in vasculitis,is so severe,you would know about it.(I do recall having chronic pain first in my legs and ankles.)This abstract http://www.ncbi.nlm.nih.gov/pubmed/16906320 says sickle cell is rare with MTHFR.More common with MTHFR,is the type of anemia I have,that is due to B12,and folate deficiency,that goes away when you replace it.I did find there is a type of vasculitis without inflammation with sickle cll disease. http://www.ajnr.org/cgi/content/full/27/1/192 To: mb12 valtrex Sent: Mon, May 31, 2010 10:15:26 AMSubject: Question for Kulp - Toe Walking and Folinic Acid Hi ,In a recent post you wrote:"Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose."My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a "flat feet" request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate.So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? Any insight that you can provide on this would be appreciated.Thanks and regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Thanks for the articles and insights, . My son definitely has both the MTHFR mutation and sickle cell trait (not disease). I think vascular pain is probably an issue. He is verbal, but he doesn't express his feelings yet on a consistent basis. I think he has a low level of discomfort/pain all the time which unfortunately he may have gotten used to. How did you diagnose the folate deficiency? Did you have a blood test done for folate or was the deficiency assumed given the MTHFR mutations? What were the signs of the anemia? Were you generally weak? Did adding the folate help at all cognitively, in terms of speech, or in other areas? Thanks again, > > " Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose. " > > My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a " flat feet " request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate. > > So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? > > Any insight that you can provide on this would be appreciated. > > Thanks and regards, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Sorry for my ignorance. My son is deficient in mb12 and folate and he has one hetero mutation in mthfr c677. So this is common? He is comt minus and taq plus plus. I just did the yasko testing but don't really understand these mutations. ?Sent from my iPhone Thanks for the articles and insights, . My son definitely has both the MTHFR mutation and sickle cell trait (not disease). I think vascular pain is probably an issue. He is verbal, but he doesn't express his feelings yet on a consistent basis. I think he has a low level of discomfort/pain all the time which unfortunately he may have gotten used to. How did you diagnose the folate deficiency? Did you have a blood test done for folate or was the deficiency assumed given the MTHFR mutations? What were the signs of the anemia? Were you generally weak? Did adding the folate help at all cognitively, in terms of speech, or in other areas? Thanks again, > > "Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose." > > My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a "flat feet" request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate. > > So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? > > Any insight that you can provide on this would be appreciated. > > Thanks and regards, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 Here's A LOT of info:http://www.heartfixer.com/AMRI-Nutrigenomics.htmMTHFR mutation is pretty common in the autism population, and common in the regular population too. (I think it's 80% autism community and 40% general population???) Both my parents have it, and I ended up homozygous for 1298 and I had my son tested... he is double heterozygous, SOOOO that means my husband is also carrying it. Since I am homozygous, we know my daughter has it too, but we are awaiting our Yasko tests to find out all the issues. Sorry for my ignorance. My son is deficient in mb12 and folate and he has one hetero mutation in mthfr c677. So this is common? He is comt minus and taq plus plus. I just did the yasko testing but don't really understand these mutations. ? Sent from my iPhone Thanks for the articles and insights, . My son definitely has both the MTHFR mutation and sickle cell trait (not disease). I think vascular pain is probably an issue. He is verbal, but he doesn't express his feelings yet on a consistent basis. I think he has a low level of discomfort/pain all the time which unfortunately he may have gotten used to. How did you diagnose the folate deficiency? Did you have a blood test done for folate or was the deficiency assumed given the MTHFR mutations? What were the signs of the anemia? Were you generally weak? Did adding the folate help at all cognitively, in terms of speech, or in other areas? Thanks again, > > " Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose. " > > My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a " flat feet " request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate. > > So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? > > Any insight that you can provide on this would be appreciated. > > Thanks and regards, > > -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 I hadn't seen the figure of 80%,but do you know how bad the mutations were ? I know there are people who only have one mutation on one gene. I am double hetero,but I have a lot of mutations in each gene.This also seems to be the case with a lot of the rarer sydromes I have read about involving MTHFR. I recently sent an email to Dr.,with a brief overview of all of my sister,and my problems,mutations,and the results of MB12,and folinic acid.She told me our problems were worse than many of the families she studied,and that my sister and I probably have other genes involved.She suggested we have a complete genetic profile done.The more I think about it,the better this idea sounds.I think everybody with an autism diagnois ought to have this done.Maybe if they had,this garbage vaccines wouldn't have gotten such a strong foothold.Vaccines may make people sick,but they do not mutate genes,in spite of the wild claims I have read that they do.I have no idea how to go about having such a profile done,or what it costs,but I would think it would be worth the cost.I know no insurance would cover it. To: mb12 valtrex Sent: Mon, May 31, 2010 3:33:02 PMSubject: Re: Re: Question for Kulp - Toe Walking and Folinic Acid Here's A LOT of info: http://www.heartfix er.com/AMRI- Nutrigenomics. htm MTHFR mutation is pretty common in the autism population, and common in the regular population too. (I think it's 80% autism community and 40% general population?? ?) Both my parents have it, and I ended up homozygous for 1298 and I had my son tested... he is double heterozygous, SOOOO that means my husband is also carrying it. Since I am homozygous, we know my daughter has it too, but we are awaiting our Yasko tests to find out all the issues. Sorry for my ignorance. My son is deficient in mb12 and folate and he has one hetero mutation in mthfr c677. So this is common? He is comt minus and taq plus plus. I just did the yasko testing but don't really understand these mutations. ?Sent from my iPhone On May 31, 2010, at 9:59 AM, "" <lisa_getteyahoo (DOT) com> wrote: Thanks for the articles and insights, . My son definitely has both the MTHFR mutation and sickle cell trait (not disease). I think vascular pain is probably an issue. He is verbal, but he doesn't express his feelings yet on a consistent basis. I think he has a low level of discomfort/pain all the time which unfortunately he may have gotten used to. How did you diagnose the folate deficiency? Did you have a blood test done for folate or was the deficiency assumed given the MTHFR mutations? What were the signs of the anemia? Were you generally weak? Did adding the folate help at all cognitively, in terms of speech, or in other areas?Thanks again,> > "Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose."> > My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a "flat feet" request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate.> > So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? > > Any insight that you can provide on this would be appreciated.> > Thanks and regards,> > -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 , I just posted on another group about my son having one copy of the C677T and one copy of the A1298C mutation to see what treatments have worked for others who have these 2 mutations. My son is also a major toe-walker, although I'm not sure this is due to pain. My son is underresponsive to pain so it seems that the toe walking is a way of getting extra sensory input (i.e. more pressure in a focalized spot) He loves deep pressure, squeezing, and is definitely a sensory seeker. He has just recently been able to actually localize pain by pointing to where he got hurt and expressing that pain ( " the booboo hurts " ) which he's never done - this he did 3 days after starting zinc and carnitine (not sure which one did it though). Btw, I was also a toe walker till I was 4, but don't have autism. I haven't been tested for the gene so I don't know if thats the cause. Shiri > > " Toe walking is a sign of MTHFR-related vascular pain.I've done it all of my life,but only now do I know why.It lessens the pressure on the feet,and pain in in the legs.It increases blood flow in the extremities. Stretching, the arms,and hands serves the same purpose. " > > My 3yo son has been toe walking almost exclusively since he was 3 yo. He stands on flat feet 50% of the time and can walk flat footed, but he reverts back to toe-walking within seconds of a " flat feet " request. He is heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. As you may know, people with sickle cell anemia (again, my son has the trait so he is heterozygous for this too)have blood with a high propensity to sickle causing vascular pain. There is growing evidence that people with sickle cell trait have blood that sickles at a lower rate. As such, your point about toe walking being caused by vascular pain really resonates with me and would be consistent with this picture. Interestingly, a key part of the treatment for sickle cell anemia is folate. > > So my question for you, and anyone else with experience with toe-walking as a response to vascular pain, is what has helped to ease the pain for you (if anything)? Has the folinic acid helped? Is it possible that it began as a response to vascular pain and has become an issue of tightened muscles? > > Any insight that you can provide on this would be appreciated. > > Thanks and regards, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2010 Report Share Posted May 31, 2010 The comprehensive one:http://www.holisticheal.com/health-tests/nutrigenomic-testing/comprehensive-methylation-panel-with-methylation-pathway-analysis.html Toni, Which Yasko tests did you order? My son is also double hetrozygous. I don't even know where to start when it comes to Yasko. Shiri > > > > > > " Toe walking is a sign of MTHFR-related vascular pain.I've done it all of > > my life,but only now do I know why.It lessens the pressure on the feet,and > > pain in in the legs.It increases blood flow in the extremities. > > Stretching, the arms,and hands serves the same purpose. " > > > > > > My 3yo son has been toe walking almost exclusively since he was 3 yo. He > > stands on flat feet 50% of the time and can walk flat footed, but he reverts > > back to toe-walking within seconds of a " flat feet " request. He is > > heterozygous for an MTHFR mutation (C677T). He also has sickle cell trait. > > As you may know, people with sickle cell anemia (again, my son has the trait > > so he is heterozygous for this too)have blood with a high propensity to > > sickle causing vascular pain. There is growing evidence that people with > > sickle cell trait have blood that sickles at a lower rate. As such, your > > point about toe walking being caused by vascular pain really resonates with > > me and would be consistent with this picture. Interestingly, a key part of > > the treatment for sickle cell anemia is folate. > > > > > > So my question for you, and anyone else with experience with toe-walking > > as a response to vascular pain, is what has helped to ease the pain for you > > (if anything)? Has the folinic acid helped? Is it possible that it began as > > a response to vascular pain and has become an issue of tightened muscles? > > > > > > Any insight that you can provide on this would be appreciated. > > > > > > Thanks and regards, > > > > > > > > > > > > > > > > -- > Toni > > ------ > Mind like a steel trap... > Rusty and illegal in 37 states. > -- Toni------Mind like a steel trap...Rusty and illegal in 37 states. Quote Link to comment Share on other sites More sharing options...
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