Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Anne, Are you sure the marks are related to B12 deficiency? Have they always been there? A lot of times tongue marks are a sign of allergy or food intolerance. I'm assuming you are on a restricted diet? My daughter gets marks with yeast, but her throat also gets red and inflamed. -------------- Original message -------------- From: " anneecbrynn " <abrynn@...> Hi All, My son, 4.3, has gone through some big changes lately. It appears that what we have been doing (primarily Valtrex and AC DMSA/ALA chelation) have finally opened up some methylation pathways. Asher is finally able to tolerate and get some benefit from MB12. We are giving it nasally, since he doesn't appear to derive any benefit when given orally. His nasal stuff has folinic acid in it. Asher has marks on the sides of his tongue that I have assumed are indications of B-12 deficiency. The tip of his tongue gets red, but it comes and goes. The sides of his tongue are wierd. It almost looks like they have scars, and outside of the " scars " looks kind of red and shiny. Has anyone seen this? Is there some interpretation of this that anyone can offer other than B-12 deficiency? This does appear to get better with B-12, but has not gone away, despite him getting 4 squirts/day. So, my question is this: should I just keep upping the B-12 to tolerance? Should I add B-12 shots? Should I start with DMG or TMG to get this kiddo's methylation pathways really going? His system is changing so fast that I can't keep up. Yesterday he got what appears to be the first cold that I have not induced with anti-virals (although we still have OLE and Valtrex in place) in several years, so I am thinking that is a good sign.... If anyone can point me to appropriate reading or share their relevant experiences, I would be most grateful. As it stands now, we have dropped our Apraxia diagnosis and moved from an autism to HFA diagnosis. We are very pleased with Asher's progress and want to keep it moving forward... Thanks in advance. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Hi , Well, the marks appear to ebb and flow with B-12, but I am not 100% sure yet. My son is a yeast king, so that is something I have been trying to track, but the marks seem at this point to correlate more with B-12. It could, of course, be food intolerance, though that would be the only sure fire evidence we have, since nothing else changes when diet is changed (his poops have never been totally normal). Asher is GF/CF, except that he gets raw goat's milk cheese every day. I will look at the cheese to see if that could be part of the problem. Thanks . Hope all is well with you and yours. Anne > > Anne, > > Are you sure the marks are related to B12 deficiency? Have they always been there? A lot of times tongue marks are a sign of allergy or food intolerance. I'm assuming you are on a restricted diet? My daughter gets marks with yeast, but her throat also gets red and inflamed. > > > > -------------- Original message -------------- > From: " anneecbrynn " <abrynn@...> > > Hi All, > > My son, 4.3, has gone through some big changes lately. It appears > that what we have been doing (primarily Valtrex and AC DMSA/ALA > chelation) have finally opened up some methylation pathways. Asher > is finally able to tolerate and get some benefit from MB12. We are > giving it nasally, since he doesn't appear to derive any benefit > when given orally. His nasal stuff has folinic acid in it. > > Asher has marks on the sides of his tongue that I have assumed are > indications of B-12 deficiency. The tip of his tongue gets red, but > it comes and goes. The sides of his tongue are wierd. It almost > looks like they have scars, and outside of the " scars " looks kind of > red and shiny. Has anyone seen this? Is there some interpretation > of this that anyone can offer other than B-12 deficiency? This does > appear to get better with B-12, but has not gone away, despite him > getting 4 squirts/day. So, my question is this: should I just keep > upping the B-12 to tolerance? Should I add B-12 shots? Should I > start with DMG or TMG to get this kiddo's methylation pathways > really going? His system is changing so fast that I can't keep up. > Yesterday he got what appears to be the first cold that I have not > induced with anti-virals (although we still have OLE and Valtrex in > place) in several years, so I am thinking that is a good sign.... > > If anyone can point me to appropriate reading or share their > relevant experiences, I would be most grateful. As it stands now, > we have dropped our Apraxia diagnosis and moved from an autism to > HFA diagnosis. We are very pleased with Asher's progress and want > to keep it moving forward... > > Thanks in advance. > > Anne > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Anne, Is is one large mark or lots of little ones. I did find something called glossitis (sp?) where they did say it could be either anemia or allergy, seems to be either one of those. Probably not helpful. [ ] Re: Calling All Methylation Experts...Please Advise Hi , Well, the marks appear to ebb and flow with B-12, but I am not 100% sure yet. My son is a yeast king, so that is something I have been trying to track, but the marks seem at this point to correlate more with B-12. It could, of course, be food intolerance, though that would be the only sure fire evidence we have, since nothing else changes when diet is changed (his poops have never been totally normal). Asher is GF/CF, except that he gets raw goat's milk cheese every day. I will look at the cheese to see if that could be part of the problem. Thanks . Hope all is well with you and yours. Anne > > Anne, > > Are you sure the marks are related to B12 deficiency? Have they always been there? A lot of times tongue marks are a sign of allergy or food intolerance. I'm assuming you are on a restricted diet? My daughter gets marks with yeast, but her throat also gets red and inflamed. > > > > -------------- Original message -------------- > From: " anneecbrynn " <abrynn@...> > > Hi All, > > My son, 4.3, has gone through some big changes lately. It appears > that what we have been doing (primarily Valtrex and AC DMSA/ALA > chelation) have finally opened up some methylation pathways. Asher > is finally able to tolerate and get some benefit from MB12. We are > giving it nasally, since he doesn't appear to derive any benefit > when given orally. His nasal stuff has folinic acid in it. > > Asher has marks on the sides of his tongue that I have assumed are > indications of B-12 deficiency. The tip of his tongue gets red, but > it comes and goes. The sides of his tongue are wierd. It almost > looks like they have scars, and outside of the " scars " looks kind of > red and shiny. Has anyone seen this? Is there some interpretation > of this that anyone can offer other than B-12 deficiency? This does > appear to get better with B-12, but has not gone away, despite him > getting 4 squirts/day. So, my question is this: should I just keep > upping the B-12 to tolerance? Should I add B-12 shots? Should I > start with DMG or TMG to get this kiddo's methylation pathways > really going? His system is changing so fast that I can't keep up. > Yesterday he got what appears to be the first cold that I have not > induced with anti-virals (although we still have OLE and Valtrex in > place) in several years, so I am thinking that is a good sign.... > > If anyone can point me to appropriate reading or share their > relevant experiences, I would be most grateful. As it stands now, > we have dropped our Apraxia diagnosis and moved from an autism to > HFA diagnosis. We are very pleased with Asher's progress and want > to keep it moving forward... > > Thanks in advance. > > Anne > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Hell Anne, My son is not nearly where yours is yet but is also making progress. I believe his methylation cycle is working better and he is progressing. Everytime we work with him, we find he is doing something better. I know -- it seems like he is changing so fast that you " can't keep up " . Our focus and empasis is changing from biological treatments to behavioral treatment. We made a list of all the areas he needs improvements (riding a bike, playing with peers etc) and made an action plan for each. When bio-treatments did not work, all behavioral training failed. I applaud and congratulate you on your progress. anneecbrynn <abrynn@...> wrote: Hi All, My son, 4.3, has gone through some big changes lately. It appears that what we have been doing (primarily Valtrex and AC DMSA/ALA chelation) have finally opened up some methylation pathways. Asher is finally able to tolerate and get some benefit from MB12. We are giving it nasally, since he doesn't appear to derive any benefit when given orally. His nasal stuff has folinic acid in it. Asher has marks on the sides of his tongue that I have assumed are indications of B-12 deficiency. The tip of his tongue gets red, but it comes and goes. The sides of his tongue are wierd. It almost looks like they have scars, and outside of the " scars " looks kind of red and shiny. Has anyone seen this? Is there some interpretation of this that anyone can offer other than B-12 deficiency? This does appear to get better with B-12, but has not gone away, despite him getting 4 squirts/day. So, my question is this: should I just keep upping the B-12 to tolerance? Should I add B-12 shots? Should I start with DMG or TMG to get this kiddo's methylation pathways really going? His system is changing so fast that I can't keep up. Yesterday he got what appears to be the first cold that I have not induced with anti-virals (although we still have OLE and Valtrex in place) in several years, so I am thinking that is a good sign.... If anyone can point me to appropriate reading or share their relevant experiences, I would be most grateful. As it stands now, we have dropped our Apraxia diagnosis and moved from an autism to HFA diagnosis. We are very pleased with Asher's progress and want to keep it moving forward... Thanks in advance. Anne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Anne, Have you run zinc levels? Geographic tongue is a relatively common tongue problem that normally responds to topical steroids. You'll have to do a bit of research to determine if this is your child's problem. There isn't a known cause of geographic tongue and treatment does not permanently cure it. Antifungal and antibacterial medications may be used for symptomatic cases; topical or systemic cortisone or prednisone may also be effective. Check on the side effects of the steroids too. Some people with this problem have Zinc deficiency and your doctor could run zinc blood levels for you. If deficient, zinc supplementation could help if absorption isn't a problem. Good Luck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Abid, I am so glad to hear that your son is improving. I know how hard you have worked to make that happen for him! I think appropriate therapies and other non-biomed interventions are very important in this process, though that is certainly where I fall short, since I am the biomed person in the household and work full time to boot. My husband does a lot of great play/work with Asher for which I am eternally grateful. I try to follow my husband's lead in the non-biomed respects, though I find that I often want to sit back and enjoy the more organic elements of Asher's development, which I attribute wholly to the interventions I have initiated (with the help of all here). My husband and Asher are in Northern California for the weekend. They rented a cabin with my husband's best friend and his son (who is 18 months old and completely unvaccinated, thanks to me). When Asher got out of the car, he looked around and said " WOW, this is beautiful! " I don't think that would have been possible without Andy, , Dana, Nell, and all of the others out there who have contributed to Asher's progress. We have a long ways to go, but we will get there. Just a few reflective thoughts as I sit here in Indiana enjoying the peace and quiet of having the house and my time to myself..... Thanks everyone. Best, Anne > Hi All, > > My son, 4.3, has gone through some big changes lately. It appears > that what we have been doing (primarily Valtrex and AC DMSA/ALA > chelation) have finally opened up some methylation pathways. Asher > is finally able to tolerate and get some benefit from MB12. We are > giving it nasally, since he doesn't appear to derive any benefit > when given orally. His nasal stuff has folinic acid in it. > > Asher has marks on the sides of his tongue that I have assumed are > indications of B-12 deficiency. The tip of his tongue gets red, but > it comes and goes. The sides of his tongue are wierd. It almost > looks like they have scars, and outside of the " scars " looks kind of > red and shiny. Has anyone seen this? Is there some interpretation > of this that anyone can offer other than B-12 deficiency? This does > appear to get better with B-12, but has not gone away, despite him > getting 4 squirts/day. So, my question is this: should I just keep > upping the B-12 to tolerance? Should I add B-12 shots? Should I > start with DMG or TMG to get this kiddo's methylation pathways > really going? His system is changing so fast that I can't keep up. > Yesterday he got what appears to be the first cold that I have not > induced with anti-virals (although we still have OLE and Valtrex in > place) in several years, so I am thinking that is a good sign.... > > If anyone can point me to appropriate reading or share their > relevant experiences, I would be most grateful. As it stands now, > we have dropped our Apraxia diagnosis and moved from an autism to > HFA diagnosis. We are very pleased with Asher's progress and want > to keep it moving forward... > > Thanks in advance. > > Anne > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 I guess I now have a new term to research! Geographic tongue, hmmmm. Asher's zinc levels (blood) are tested every three months or so. An earlier reading had it a bit low, and the last reading (2 months ago) it was fine. Thanks for the lead. Anne > > Anne, > > Have you run zinc levels? Geographic tongue is a relatively common > tongue problem that normally responds to topical steroids. You'll have > to do a bit of research to determine if this is your child's problem. > There isn't a known cause of geographic tongue and treatment does not > permanently cure it. Antifungal and antibacterial medications may be > used for symptomatic cases; topical or systemic cortisone or prednisone > may also be effective. Check on the side effects of the steroids too. > Some people with this problem have Zinc deficiency and your doctor > could run zinc blood levels for you. If deficient, zinc > supplementation could help if absorption isn't a problem. > > Good Luck > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 >As it stands now, > we have dropped our Apraxia diagnosis and moved from an autism to > HFA diagnosis. Great, great news! I'm so glad so much is happening for him. I never had any luck messing around with methylation so I haven't even a tiny scrap of help for you. But I'm betting you'll figure it out! Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 ----- Original Message ----- From: anneecbrynn When Asher got out of the car, he looked around and said " WOW, this is beautiful! " <<<<Well, this makes me cry as I know just how much something like this means. What a great weekend, lots of good news everywhere. Enjoy, Anne, your well deserved rest. Just a few reflective thoughts as I sit here in Indiana enjoying the peace and quiet of having the house and my time to myself..... Thanks everyone. Best, Anne > Hi All, > > My son, 4.3, has gone through some big changes lately. It appears > that what we have been doing (primarily Valtrex and AC DMSA/ALA > chelation) have finally opened up some methylation pathways. Asher > is finally able to tolerate and get some benefit from MB12. We are > giving it nasally, since he doesn't appear to derive any benefit > when given orally. His nasal stuff has folinic acid in it. > > Asher has marks on the sides of his tongue that I have assumed are > indications of B-12 deficiency. The tip of his tongue gets red, but > it comes and goes. The sides of his tongue are wierd. It almost > looks like they have scars, and outside of the " scars " looks kind of > red and shiny. Has anyone seen this? Is there some interpretation > of this that anyone can offer other than B-12 deficiency? This does > appear to get better with B-12, but has not gone away, despite him > getting 4 squirts/day. So, my question is this: should I just keep > upping the B-12 to tolerance? Should I add B-12 shots? Should I > start with DMG or TMG to get this kiddo's methylation pathways > really going? His system is changing so fast that I can't keep up. > Yesterday he got what appears to be the first cold that I have not > induced with anti-virals (although we still have OLE and Valtrex in > place) in several years, so I am thinking that is a good sign.... > > If anyone can point me to appropriate reading or share their > relevant experiences, I would be most grateful. As it stands now, > we have dropped our Apraxia diagnosis and moved from an autism to > HFA diagnosis. We are very pleased with Asher's progress and want > to keep it moving forward... > > Thanks in advance. > > Anne > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Anne, I can hardly spell methylation, so I've no advice, but your news about Asher is so wonderful it makes me goosebumpy. He has come so far! What a great mom you are :-) Big happy congratulations cyber hug! Anita Quote Link to comment Share on other sites More sharing options...
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