Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Dr McCandless, Two years ago we tried one dose of the 300,000 IUs vitamin A and our son threw up 9 hrs later. We decided not to do the 2nd day dose because we thought throwing up may be a sign of vitamin A toxicity. Your opinion at the time was it was most likely not a toxic vit A reaction. Today we tried again. Our son was fine for several hours and then started looking nauseated. Ironically enough, he threw up at the 9 hour mark again just like 2 years ago. Based on what you indicated back then, we are inclined to go ahead with the 2nd dose tomorrow. My question is: If the throwing up is not really a vitamin A toxicity sign, then what is causing it? Is this possibly a good " detox " sign that the measles are under a major attack by the vitamin A? If so then a 2nd dose would be a good thing and 25,000 IU maint. since it may be that he is loaded with measles. Your thoughts are appreciated, L Re: Re: Cross Post: Vitamin A Megadose Question Please Help : Thanks, you are correct - I still stand by the protocol of 400,000iu a day (all at once) for 2 days every six months (or 300,000 for smaller kids). I use Klaire's mycelized A at 5000iu per drop. I have had no problems with many many parents doing this for years now. You would have to talk to Megson about her idea of mutating viruses - I know nothing about that. I routinely give all but tiny kids 25,000iu daily for maintenance in addition to the bolus every 6 months if they still have gut problems (nodular hyperplasia from measles doesn't go away very easily). Dr. JM adoptinggrace <adoptinggrace@ <mailto:adoptinggrace%40mindspring.com> mindspring.com> wrote: .. I think Dr. McCandless just posted in recent days the Vitamin A Protocol that she and Dr. Baker worked on...it is in the files of CK2 also. That is still her opinion but don't know that she ever posted anything on any difference of protocol opinion with Dr. Megson. Different doctors have somewhat different approaches at times to the same treatment and Dr. JM still stands by the paper/protocol that she and Dr. Baker published from the best of my knowledge. I think you might want to check this document before doing it for dosage recommendations too from her standpoint-before you decide what to do. There are also follow up posts on this in the old messages most likely so that might be helpful too. With the improved search feature you can find things much quicker now! > > Listmates, > > We are considering doing the vitamin A megadose. My understanding from the > ck2 files and posts on CSB is that the dose is 300,000 IUs per day for 2 > days. I noticed a letter in the ck2 files section dated Dec 11, 2005 with > the following note: > > " Dr. Megson told us she no longer does the 400,000 iu two day dose of Vit A. > The most she is now doing is 25,000 iu per day. Dr. Megson said there is > some concern with the possibility of the high dose of Vit A mutating viruses > in the body and creating something new. " > > This note is about a year old. Does anyone know if Dr. Megson still does not > follow the megadose protocol and what her current position is? > > Has Dr McCandless posted at all on Dr Megson's concern? > > Thanks for anyone that has info. > > L > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Dr McCandless, Two years ago we tried one dose of the 300,000 IUs vitamin A and our son threw up 9 hrs later. We decided not to do the 2nd day dose because we thought throwing up may be a sign of vitamin A toxicity. Your opinion at the time was it was most likely not a toxic vit A reaction. Today we tried again. Our son was fine for several hours and then started looking nauseated. Ironically enough, he threw up at the 9 hour mark again just like 2 years ago. Based on what you indicated back then, we are inclined to go ahead with the 2nd dose tomorrow. My question is: If the throwing up is not really a vitamin A toxicity sign, then what is causing it? Is this possibly a good " detox " sign that the measles are under a major attack by the vitamin A? If so then a 2nd dose would be a good thing and 25,000 IU maint. since it may be that he is loaded with measles. Your thoughts are appreciated, L Re: Re: Cross Post: Vitamin A Megadose Question Please Help : Thanks, you are correct - I still stand by the protocol of 400,000iu a day (all at once) for 2 days every six months (or 300,000 for smaller kids). I use Klaire's mycelized A at 5000iu per drop. I have had no problems with many many parents doing this for years now. You would have to talk to Megson about her idea of mutating viruses - I know nothing about that. I routinely give all but tiny kids 25,000iu daily for maintenance in addition to the bolus every 6 months if they still have gut problems (nodular hyperplasia from measles doesn't go away very easily). Dr. JM adoptinggrace <adoptinggrace@ <mailto:adoptinggrace%40mindspring.com> mindspring.com> wrote: .. I think Dr. McCandless just posted in recent days the Vitamin A Protocol that she and Dr. Baker worked on...it is in the files of CK2 also. That is still her opinion but don't know that she ever posted anything on any difference of protocol opinion with Dr. Megson. Different doctors have somewhat different approaches at times to the same treatment and Dr. JM still stands by the paper/protocol that she and Dr. Baker published from the best of my knowledge. I think you might want to check this document before doing it for dosage recommendations too from her standpoint-before you decide what to do. There are also follow up posts on this in the old messages most likely so that might be helpful too. With the improved search feature you can find things much quicker now! > > Listmates, > > We are considering doing the vitamin A megadose. My understanding from the > ck2 files and posts on CSB is that the dose is 300,000 IUs per day for 2 > days. I noticed a letter in the ck2 files section dated Dec 11, 2005 with > the following note: > > " Dr. Megson told us she no longer does the 400,000 iu two day dose of Vit A. > The most she is now doing is 25,000 iu per day. Dr. Megson said there is > some concern with the possibility of the high dose of Vit A mutating viruses > in the body and creating something new. " > > This note is about a year old. Does anyone know if Dr. Megson still does not > follow the megadose protocol and what her current position is? > > Has Dr McCandless posted at all on Dr Megson's concern? > > Thanks for anyone that has info. > > L > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 .. Not Dr. JM by any means but I did a quick search of her posts on this.... below are some posts and I think you can find more if you'll do a search using " ADVANCED " that is located by the search box.... it is quick and easy now to find all that someone has written on a topic.. FINALLY Yahoo does something to make things easy! I am not giving the advice to stop but I'd read these and then look a little more before giving a second dose. Both of these are in response to Vitamin A related posts in the pasts...you will have to read pretty far into the first one to find mention of nausea. All the best, Posts from Dr. JM in the past on Vitamin A: I have already sent this with a note to Dr. Usman. Please read carefully before embarking on this therapy. Dr. JM CLARIFICATION ON THE VITAMIN A ISSUE Sidney Mac Baker, M.D. and Jaquelyn McCandless, M.D. Internet posting on an autism parent-support list has revealed some potentially harmful misunderstanding on some parents' part concerning the use of Vitamin A. The speculation that Vitamin A may benefit children with persistent measles vaccine virus problems as has been shown for hospitalized children with acute wild measles infections has led to some parents using the mega- dosing regime with or without medical supervision with variations of dosing and agents. A recent post from a parent who was giving mega-doses to her child for 4 days in a row wanted to know if she should increase the dose even more, even though her child was showing alternating lethargy and hyperactivity, because he hadn't yet gotten what she called the " measles " rash. She stated that she had gotten this from another parent, who believed you would not have effectiveness until you got the rash. The parent was contacted immediately and told to stop all Vitamin A, and the list was given all pertinent information about the Vitamin A issue. (Her child is fine now). We felt it was important enough to alert all of you in the DAN! community of our position on this treatment. Background: (Dr. Baker) In the spring of 2002, measles virus was reliably reported to be present in the spinal fluid of some autistic children who had previously demonstrated measles vaccine virus in the lymphoid tissue of their digestive tracts. The alarm of this finding increased our incentive to come up with ideas upon which well-informed parents might base safe private decisions for their children pending a shift in public policy to address the measles virus issue. The gap between the urgency of private decisions in regard to this issue and the resistance to the very idea on the part of those responsible for public policy suggested that it might be many years before speculations about treatment of individual children with atypical presence of MV might be resolved by research in groups of children. Very high doses of vitamin A palmitate (400,000iu per day for two consecutive days) is the only measles specific treatment for children with active acute measles. This common childhood infection may involve a sometimes fatal inflammation of the lungs (pneumonia), inflammation of the brain (encephalitis) as well as other complications that befall very sick children. Other anti-viral treatments have not been shown to work in measles. A discussion at the DAN! Think Tank in May of 2002 in Boston led to a consensus that some form of Vitamin A treatment would be worthy of consideration. Guidelines for such treatment were published in Biomedical Assessment Options For Children with Autism and Related Problems, by Pangborn, J and Baker, SM, published by the Autism Research Institute, 4182 Avenue, San Diego, DA 92116 October 2002 Edition, pages 216-220. The chronic nature of the possible measles problem in a subgroup of children in the autism spectrum led me (SMB) to consider that a lengthy treatment that pushed Vitamin A levels toward the high end of the safe range would make sense in that it answered the need of parents to observe their children over a period of a few weeks or longer to judge progress if any should occur and it gave time for monitoring a slow increase intake to avoid surprises of toxicity. My own experience with this approach in my patients did not yield positive results. Meanwhile Dr. McCandless, inspired by Binstock's and my literature search showing this to be effective in children with wild measles and also as reported from English parents with 2-day high dosing, began suggesting that parents who fit certain criteria might try the two-day protocol, followed by maintenance doses only for at least 6 months before doing any more mega-doses. Her preliminary clinical study of salivary secretory IgA rubeola antibodies done with Dr. Ari Vojdani at Immunosciences has revealed an elevated level in 14 of 32 children tested. Those with very high levels were some of the best responders to this protocol, and other positive feedback started coming in from parents doing the protocol. Another study is almost completed checking both the serum IgG rubeola antibody level as well as the secretory IgA salivary antibody level to see how these two correlate along with clinical assessment and reports. Seizing upon the positive implications of those reports and guided by the simplicity and safety of that approach (for which safety has been documented in studies of both well-nourished and undernourished children) I took the position that this approach might form the basis for clinical observations that could benefit children. Unfortunately, there are no generally available tests to reliably measure Vitamin A levels in the body; the assessment is primarily clinical observation. Signs of toxicity are a " scruffy " rash around the neck, headache, nausea, vomiting, lethargy, and excessive unusual hyperactivity. The few parents reporting whose children have shown any of these responses have stopped with no sequelae. Most reports have been very positive with some showing remarkable benefit. It is important to emphasize that this is not a treatment for autism generally (though the RDI is probably very low for Vitamin A) but only for those suspected of having measles in their systems. The risks at this time do not seem to be from the protocol itself, but from misunderstandings such as related above. High doses should not be given until a skin rash is produced, for that is one sign of Vitamin A poisoning! Based upon existing medical literature, two (2) days of high dose vitamin A in the range of 200,000-400,000iu of Vitamin A Palmitate is the only way of proceeding that appears to be safe. Any further exploration of high- dose Vitamin A therapy must be carried out with close medical supervision. Based on the belief that children with active measles in their gut or brain are probably low or depleted in Vitamin A, the criteria as outlined by Dr. McCandless for her patients for launching into this pilot study are three or more of the following: -History of regression after MMR (particularly in those children who had an immediate and strong negative reaction to the vaccine or booster). -Persistent gut problems in spite of all recommended treatments. -More than slightly elevated IgG serum rubeola levels. -Elevated anti-myelin basic protein (MBP) and anti-neurofilament antibodies (indication of autoimmune reaction). -Elevated secretory salivary rubeola IgA antibodies. -Needless to say, endoscopy showing ileal lymphoid hyperplasia with vaccine strain measles by PCR, or measles in CSF studies. Sidney M. Baker, M.D. Jaquelyn McCandless, M.D. 3/21/2004 > In a message dated 30/04/2005 20:06:01 GMT Standard Time, > JMcCandless@... writes: > > Sam: Do not give any more of the Vitamin A; headache and nausea are > possible signs of toxicity. Give him lots of fluids and forget any other > nutrients for now - he may have an unusual sensitivity; for his weight I > would have advised 400,000 (glad I didn't get time to post that). All of > these side effects that I have ever seen in our kids has been totally > reversible, and there is nothing to do but wait it out. And, there is no > good way to determine ahead of time who might have this sensitivity. Please > keep us posted. Dr. JM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 : Nausea can be from the gut or from central CNS origin, which is the one we worry about. I doubt that the nausea is a CNS sign; it's just that that much oily stuff can make some people feel sick. The signs I worry about are lethargy, sleepiness, desire to sleep in the daytime when he usually is not tired, complaint of headache, and of course a scruffy rash around his neck. Can he tell you if his head hurts? If none of these are present and he seems OK in the morning I would go ahead. I presume he has had the MMR, has high auto-antibodies, has gut issues, and/or high rubeola titers? Has he been scoped? What does your DAN! say? We know if the child has measles in the gut they can handle huge doses of A - the virus just seems to eat it up. However, please check him when you go to bed to make sure he can be roused, and use your intuition as to how he seems in the morning. I feel if he had the apparently very rare genetic defect that would not allow him to handle a lot of A you would have seen more clear signs of toxicity when you gave him 300,000iu before. If you have doubts, better to be safe than sorry, and do not continue. I have heard of only one child with A toxicity so far, and it was reversible when A was stopped. However, I do not want your boy or anyone to have that happen, even though it is highly unlikely. I presume you have read the High-Dose info in the article on my website, www.starvingbrains.com? Keep us posted. Dr. JM john leon wrote: Dr McCandless, Two years ago we tried one dose of the 300,000 IUs vitamin A and our son threw up 9 hrs later. We decided not to do the 2nd day dose because we thought throwing up may be a sign of vitamin A toxicity. Your opinion at the time was it was most likely not a toxic vit A reaction. Today we tried again. Our son was fine for several hours and then started looking nauseated. Ironically enough, he threw up at the 9 hour mark again just like 2 years ago. Based on what you indicated back then, we are inclined to go ahead with the 2nd dose tomorrow. My question is: If the throwing up is not really a vitamin A toxicity sign, then what is causing it? Is this possibly a good " detox " sign that the measles are under a major attack by the vitamin A? If so then a 2nd dose would be a good thing and 25,000 IU maint. since it may be that he is loaded with measles. Your thoughts are appreciated, L Re: Re: Cross Post: Vitamin A Megadose Question Please Help : Thanks, you are correct - I still stand by the protocol of 400,000iu a day (all at once) for 2 days every six months (or 300,000 for smaller kids). I use Klaire's mycelized A at 5000iu per drop. I have had no problems with many many parents doing this for years now. You would have to talk to Megson about her idea of mutating viruses - I know nothing about that. I routinely give all but tiny kids 25,000iu daily for maintenance in addition to the bolus every 6 months if they still have gut problems (nodular hyperplasia from measles doesn't go away very easily). Dr. JM adoptinggrace <adoptinggrace@ <mailto:adoptinggrace%40mindspring.com> mindspring.com> wrote: .. I think Dr. McCandless just posted in recent days the Vitamin A Protocol that she and Dr. Baker worked on...it is in the files of CK2 also. That is still her opinion but don't know that she ever posted anything on any difference of protocol opinion with Dr. Megson. Different doctors have somewhat different approaches at times to the same treatment and Dr. JM still stands by the paper/protocol that she and Dr. Baker published from the best of my knowledge. I think you might want to check this document before doing it for dosage recommendations too from her standpoint-before you decide what to do. There are also follow up posts on this in the old messages most likely so that might be helpful too. With the improved search feature you can find things much quicker now! > > Listmates, > > We are considering doing the vitamin A megadose. My understanding from the > ck2 files and posts on CSB is that the dose is 300,000 IUs per day for 2 > days. I noticed a letter in the ck2 files section dated Dec 11, 2005 with > the following note: > > " Dr. Megson told us she no longer does the 400,000 iu two day dose of Vit A. > The most she is now doing is 25,000 iu per day. Dr. Megson said there is > some concern with the possibility of the high dose of Vit A mutating viruses > in the body and creating something new. " > > This note is about a year old. Does anyone know if Dr. Megson still does not > follow the megadose protocol and what her current position is? > > Has Dr McCandless posted at all on Dr Megson's concern? > > Thanks for anyone that has info. > > L > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 & Ann, I am really stumped on this megadose of vitamin A. The notes from below say " Signs of toxicity are a " scruffy " rash around the neck, headache, nausea, vomiting, lethargy, and excessive unusual hyperactivity. The few parents reporting whose children have shown any of these responses have stopped with no sequelae. " JW has thrown up twice (9 and 10 hrs after the dose) and has had stomach pains. Based on the notes from below, you would think we should not give the 2nd dose since he has had nausea and vomiting. But, I was hoping to hear from Dr McCandless since the last time we did this 2 yrs ago she felt like we could have given the 2nd dose after vomiting on the first dose. Maybe nausea and vomiting without a scruffy rash and lethargy are ok since they may just be signs of detox. This is where my confusion comes in. He has thrown up twice. Is that toxicity or detox? I do not know what to do about the 2nd dose tomorrow, but I am leaning towards NOT giving it barring further clarification on the toxicity signs above. I would hate to mis out on a full measles detox, but I would rather be safe if I don't get clarification. L Re: Vitamin A Megadose: Some kind of reaction Good or bad sign? .. Not Dr. JM by any means but I did a quick search of her posts on this.... below are some posts and I think you can find more if you'll do a search using " ADVANCED " that is located by the search box.... it is quick and easy now to find all that someone has written on a topic.. FINALLY Yahoo does something to make things easy! I am not giving the advice to stop but I'd read these and then look a little more before giving a second dose. Both of these are in response to Vitamin A related posts in the pasts...you will have to read pretty far into the first one to find mention of nausea. All the best, Posts from Dr. JM in the past on Vitamin A: I have already sent this with a note to Dr. Usman. Please read carefully before embarking on this therapy. Dr. JM CLARIFICATION ON THE VITAMIN A ISSUE Sidney Mac Baker, M.D. and Jaquelyn McCandless, M.D. Internet posting on an autism parent-support list has revealed some potentially harmful misunderstanding on some parents' part concerning the use of Vitamin A. The speculation that Vitamin A may benefit children with persistent measles vaccine virus problems as has been shown for hospitalized children with acute wild measles infections has led to some parents using the mega- dosing regime with or without medical supervision with variations of dosing and agents. A recent post from a parent who was giving mega-doses to her child for 4 days in a row wanted to know if she should increase the dose even more, even though her child was showing alternating lethargy and hyperactivity, because he hadn't yet gotten what she called the " measles " rash. She stated that she had gotten this from another parent, who believed you would not have effectiveness until you got the rash. The parent was contacted immediately and told to stop all Vitamin A, and the list was given all pertinent information about the Vitamin A issue. (Her child is fine now). We felt it was important enough to alert all of you in the DAN! community of our position on this treatment. Background: (Dr. Baker) In the spring of 2002, measles virus was reliably reported to be present in the spinal fluid of some autistic children who had previously demonstrated measles vaccine virus in the lymphoid tissue of their digestive tracts. The alarm of this finding increased our incentive to come up with ideas upon which well-informed parents might base safe private decisions for their children pending a shift in public policy to address the measles virus issue. The gap between the urgency of private decisions in regard to this issue and the resistance to the very idea on the part of those responsible for public policy suggested that it might be many years before speculations about treatment of individual children with atypical presence of MV might be resolved by research in groups of children. Very high doses of vitamin A palmitate (400,000iu per day for two consecutive days) is the only measles specific treatment for children with active acute measles. This common childhood infection may involve a sometimes fatal inflammation of the lungs (pneumonia), inflammation of the brain (encephalitis) as well as other complications that befall very sick children. Other anti-viral treatments have not been shown to work in measles. A discussion at the DAN! Think Tank in May of 2002 in Boston led to a consensus that some form of Vitamin A treatment would be worthy of consideration. Guidelines for such treatment were published in Biomedical Assessment Options For Children with Autism and Related Problems, by Pangborn, J and Baker, SM, published by the Autism Research Institute, 4182 Avenue, San Diego, DA 92116 October 2002 Edition, pages 216-220. The chronic nature of the possible measles problem in a subgroup of children in the autism spectrum led me (SMB) to consider that a lengthy treatment that pushed Vitamin A levels toward the high end of the safe range would make sense in that it answered the need of parents to observe their children over a period of a few weeks or longer to judge progress if any should occur and it gave time for monitoring a slow increase intake to avoid surprises of toxicity. My own experience with this approach in my patients did not yield positive results. Meanwhile Dr. McCandless, inspired by Binstock's and my literature search showing this to be effective in children with wild measles and also as reported from English parents with 2-day high dosing, began suggesting that parents who fit certain criteria might try the two-day protocol, followed by maintenance doses only for at least 6 months before doing any more mega-doses. Her preliminary clinical study of salivary secretory IgA rubeola antibodies done with Dr. Ari Vojdani at Immunosciences has revealed an elevated level in 14 of 32 children tested. Those with very high levels were some of the best responders to this protocol, and other positive feedback started coming in from parents doing the protocol. Another study is almost completed checking both the serum IgG rubeola antibody level as well as the secretory IgA salivary antibody level to see how these two correlate along with clinical assessment and reports. Seizing upon the positive implications of those reports and guided by the simplicity and safety of that approach (for which safety has been documented in studies of both well-nourished and undernourished children) I took the position that this approach might form the basis for clinical observations that could benefit children. Unfortunately, there are no generally available tests to reliably measure Vitamin A levels in the body; the assessment is primarily clinical observation. Signs of toxicity are a " scruffy " rash around the neck, headache, nausea, vomiting, lethargy, and excessive unusual hyperactivity. The few parents reporting whose children have shown any of these responses have stopped with no sequelae. Most reports have been very positive with some showing remarkable benefit. It is important to emphasize that this is not a treatment for autism generally (though the RDI is probably very low for Vitamin A) but only for those suspected of having measles in their systems. The risks at this time do not seem to be from the protocol itself, but from misunderstandings such as related above. High doses should not be given until a skin rash is produced, for that is one sign of Vitamin A poisoning! Based upon existing medical literature, two (2) days of high dose vitamin A in the range of 200,000-400,000iu of Vitamin A Palmitate is the only way of proceeding that appears to be safe. Any further exploration of high- dose Vitamin A therapy must be carried out with close medical supervision. Based on the belief that children with active measles in their gut or brain are probably low or depleted in Vitamin A, the criteria as outlined by Dr. McCandless for her patients for launching into this pilot study are three or more of the following: -History of regression after MMR (particularly in those children who had an immediate and strong negative reaction to the vaccine or booster). -Persistent gut problems in spite of all recommended treatments. -More than slightly elevated IgG serum rubeola levels. -Elevated anti-myelin basic protein (MBP) and anti-neurofilament antibodies (indication of autoimmune reaction). -Elevated secretory salivary rubeola IgA antibodies. -Needless to say, endoscopy showing ileal lymphoid hyperplasia with vaccine strain measles by PCR, or measles in CSF studies. Sidney M. Baker, M.D. Jaquelyn McCandless, M.D. 3/21/2004 > In a message dated 30/04/2005 20:06:01 GMT Standard Time, > JMcCandless@... writes: > > Sam: Do not give any more of the Vitamin A; headache and nausea are > possible signs of toxicity. Give him lots of fluids and forget any other > nutrients for now - he may have an unusual sensitivity; for his weight I > would have advised 400,000 (glad I didn't get time to post that). All of > these side effects that I have ever seen in our kids has been totally > reversible, and there is nothing to do but wait it out. And, there is no > good way to determine ahead of time who might have this sensitivity. Please > keep us posted. Dr. JM Quote Link to comment Share on other sites More sharing options...
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