Collective Amnesia...
A comment by HCN prompted me to look at the history of "alternative" autism treatments - what an eye-opener!
Now, the history of medicine is littered with the dessicated corpses of treatments that had been vigorously promoted but failed to live up to their promise. Some of these now-dead treatments had long and full lives before they were brought down and others had only a short time on the stage. A key feature in the eventual downfall of most (if not all) of these ex-treatments is that they were "killed" by the scientific method.
"Balancing the humors" had a good long run as a medical therapy, first formulated by Hiipocrates, Plato and Aristotle in the 4th and 5th centuries BCE and lasting (in some form) until well into the 16th century CE. Fortunately, it is now dead - although it sometimes pops up in various "alternative" medicine explanations. It was killed by the growing understanding of how the body actually operated.
More recently, we have (through scientific investigation) found that homeopathy is just water (or lactose) and that acupuncture "works" no matter where you stick the needle. And on the way, we have learned that the bleeding, purging and blistering of "heroic medicine" also don't work (and more often kill or injure). We've also learned that electroshock is not a useful treatment for homosexuality (although it does help depression) and that treating alcoholism with morphine and opiate addiction with cocaine is - at best - a short-lived solution.
In short, although there have always been some practitioners who have clung to the old ways, modern medicine (i.e. 20th and 21st century medicine) has been fairly quick to drop therapies that either don't work or that have been superceded by better or safer treatments. The same cannot be said of "alternative" medicine, which - almost by definition - refuses to reject any therapy except (ironically) those used by "mainstream" medicine.
Back to autism therapies.
On the advice of a reader, I went to Dr. Bernard Rimland's "Autism Research Institute" (ARI) website and found the following therapies recommended for the treatment of autism:
DMG (dimethly glycine, Betaine) - Among the benefits claimed for DMG are:
A quick stroll through MedLine revealed that a few clinical trials (as opposed to parental anecdotes) have been completed on DMG. Their results:
[1] A study of 37 autistic children 3 - 11 years of age -
[2] A pilot study of eight autistic people 4 -30 years old (small number, large age spread!) -
Bolman WM, Richmond JA. A double-blind, placebo-controlled, crossover pilot trial of low dose dimethyl-glycine in patients with autistic disorder. J Autism Dev Disord. 1999 Jun;29. (3):191-4.
[3] A review of the performance-enhancing effects of DMG (NB - Pangamic acid is a combination of DMG and calcium gluconate):
Gray ME, Titlow LW. The effect of pangamic acid on maximal treadmill performance. Med Sci Sports Exerc. 1982;14(6):424-7.
[4] Finally, a claim that has been substantiated - in one study:
Graber CD, Goust JM, Glassman AD, Kendall R, Loadholt CB. Immunomodulating properties of dimethyl-glycine in humans. J Infect Dis. 1981 Jan;143(1):101-5.
This sounds like a great deal until one considers the many people claiming an autoimmune component to autism. Would increasing the immune response be such a good idea, if this is the case?
Vitamin B6 and Magnesium
This one goes 'way back - back to when Dr. Rimland was a contributor to Linus Pauling's book "Orthomolecular Psychiatry: Treatment of Schizophrenia". On the ARI website, the following claims are made about the therapy:
A number of anecdotes are also relayed, although the results of Dr. Rimland's largest (and earliest that I can find) B6 and magnesium study are only briefly mentioned in passing. This study, which apparently involved over 200 autistic children, was mentioned in the book "Orthomolecular Psychiatry: Treatment of Schizophrenia" (Hawkins and Pauling, eds). Although I have not yet received a copy of the book (through the miracle of interlibrary loan), a previous reading of the chapter by Dr. Rimland disclosed to me a revealing aspect of the study.
Some of the children in this study were institutionalized and Dr. Rimland found that these children had a much lower improvement rate. Although he did not test for compliance (by testing the urine, as he did in later studies), Dr. Rimland's assumption was that the staff of the institutions were not being compliant because they didn't believe that the therapy would be effective.
Interestingly, my (extremely limited) experience with long-term care facilities (as institutions are now called) is that once a medication order is written, it will be carried out religiously - sometimes in the face of ample reason to stop giving it. I find it odd, therefore, to blame institutional non-compliance for the poor results in these children. An alternative hypothesis is that the staff of the institutions did not have a "stake" in the outcome and so were more objective.
Secretin
The secretin story is pretty much a classic for alternative medicine. The story begins in April 1996, when an autistic child underwent an endoscopy and received - as is routine - an injection of secretin to confirm the continuity of the pancreatic duct (it causes pancreatic juice to squirt out of the duct, which can easily be seen during endoscopy). Following this procedure, he demonstrated "remarkable" improvement in language and social skills. His mother, Victoria Beck, determined that the only medication he had received that could be responsible for this improvement was the secretin.
Ms. Beck not only wrote a book (Confronting Autism) on the subject of secretin and autism, she (and Dr. Rimland) patented the treatment. This patent was subsequently sold to the Repligen corporation, which proceeded to make secretin (human secretin, using recombinant technology) and test it on autistic children.
Interestingly, part of the sale included Repligen stock - Ms. Beck reportedly donated her portion to the Autism Research Institute (run by Dr. Rimland out of his home), as did Dr. Rimland. So the Autism Research Institute has a financial interest in making secretin "work" for autism, since that product promised to be Repligen's biggest seller.
This story "broke" in early October 1998, after appearances by Ms. Beck on "Dateline" and "Good Morning America". The demand was so great that the one company making secretin - Ferring - was sold out by October 16th. In late 1998, Dr. Rimland recorded in the ARI Newsletter that:
Many of the initial clinical studies on secretin were promising, but only small numbers of patients were treated in these studies. The clouds began to gather when larger, more rigorous studies were done, including Repligen's own studies to earn an FDA-approved indication for autism.
One of the first "bad news" studies was the following:
Lack of Benefit of a Single Dose of Synthetic Human Secretin in the Treatment of Autism and Pervasive Developmental Disorder. Adrian D. Sandler, M.D., Kelly A. Sutton, M.A., Jeffrey DeWeese, B.S., Mary Alice Girardi, P.N.P., Victoria Sheppard, M.D., and James W. Bodfish, Ph.D. N Engl J Med. 1999 Dec 9;341 (24):1801-6.
This study looked at 60 autistic children and found:
and
The last quote forshadowed the events to come.
Dr. Rimland responded quickly to this first setback with an article in the ARI Newsletter titled: "Secretin: positive, negative reports in the 'top of the first inning' ". But the bad news just kept coming.
[April 200] - "Results of both inquiries indicate that although treatment with secretin was reported to cause transient changes in speech and behavior in some children, overall it produced few clinically meaningful changes when compared to children given placebo injections."
Secretin and autism: a two-part clinical investigation.Chez MG, Buchanan CP, Bagan BT, Hammer MS, McCarthy KS, Ovrutskaya I, Nowinski CV, Cohen ZS. J Autism Dev Disord. 2000 Apr;30(2):87-94
[May 2001] - "A single dose of intravenous secretin does not appear to have significant effects on either parents' perception of autistic behaviors or language skills at 6 weeks after injection. Transient, marginally significant improvements in autistic behaviors may occur in some children."
A randomized, double-blind, placebo-controlled trial of single-dose intravenous secretin as treatment for children with autism. Coniglio SJ, Lewis JD, Lang C, Burns TG, Subhani-Siddique R, Weintraub A, Schub H, Holden EW. J Pediatr. 2001 May;138(5):649-55
[May 2001] - "No evidence is provided for the efficacy of repeated doses of porcine secretin in the treatment of children with autism."
Repeated doses of porcine secretin in the treatment of autism: a randomized, placebo-controlled trial. Roberts W, Weaver L, Brian J, Bryson S, Emelianova S, Griffiths AM, MacKinnon B, Yim C, Wolpin J, Koren G. Pediatrics. 2001 May;107(5):E71
[November 2001] - "There was no evidence for efficacy of secretin in this randomized, placebo-controlled, double-blind trial."
Multisite, double-blind, placebo-controlled trial of porcine secretin in autism. Owley T, McMahon W, Cook EH, Laulhere T, South M, Mays LZ, Shernoff ES, Lainhart J, Modahl CB, Corsello C, Ozonoff S, Risi S, Lord C, Leventhal BL, Filipek PA. J Am Acad Child Adolesc Psychiatry. 2001 Nov;40(11):1293-9.
[November 2002] - "No evidence that either biologic or synthetic secretin provided amelioration of symptoms beyond placebo was observed. This held true when children with and without gastrointestinal problems were examined separately."
A randomized, double-blind, placebo-controlled trial of porcine versus synthetic secretin for reducing symptoms of autism. Unis AS, Munson JA, Rogers SJ, Goldson E, Osterling J, Gabriels R, Abbott RD, Dawson G. J Am Acad Child Adolesc Psychiatry. 2002 Nov;41(11):1315-21
[December 2002] - "The results of this study do not support secretin as a treatment for autism."
Lack of benefit of intravenous synthetic human secretin in the treatment of autism. Molloy CA, Manning-Courtney P, Swayne S, Bean J, Brown JM, Murray DS, Kinsman AM, Brasington M, Ulrich CD 2nd. J Autism Dev Disord. 2002 Dec;32(6):545-51.
[August 2003] - "In a controlled setting, parents of young children with autism are unable to distinguish the short term behavioural effects of secretin from placebo."
Children with autistic spectrum disorders. II: parents are unable to distinguish secretin from placebo under double-blind conditions. Coplan J, Souders MC, Mulberg AE, Belchic JK, Wray J, Jawad AF, Gallagher PR, Mitchell R, Gerdes M, Levy SE. Arch Dis Child. 2003 Aug;88(8):737-9.
In 2004, the Repligen Corporation - partway through a Phase III study of secretin for autism - threw in the towel because the initial results were unfavorable. This should have been the end of it...but it wasn't. For full details, read Dr. Rimland's impassioned letter to the CEO of Repligen. The Autism Reseach Institute still claims that secretin is an effective treamtment for autism.
And don't miss Dr. Rimland's complaints about the double-blind, placebo-controlled method.
Conclusion
After reading all this, I was left to wonder how parents can continue to listen to the recommendation of people like this (and ARI is far more scientific and reasoned than some of the others). Of course, much of the reason is that the parents don't know the history of some of these treatments - they only know what the organizations like DAN! (tied with ARI) tell them unless people like me can get to them.
The practitioners who follow these therapies are the ones I have the most concern for (and about). The parents have only been exposed to this for a relatively short time, while the practitioners must have seen some of these therapies rise and fall. They must either have a severe memory disorder or be able to tolerate near-fatal amounts of cognitive dissonance. Either way, I think that there is a problem.
Prometheus
Now, the history of medicine is littered with the dessicated corpses of treatments that had been vigorously promoted but failed to live up to their promise. Some of these now-dead treatments had long and full lives before they were brought down and others had only a short time on the stage. A key feature in the eventual downfall of most (if not all) of these ex-treatments is that they were "killed" by the scientific method.
"Balancing the humors" had a good long run as a medical therapy, first formulated by Hiipocrates, Plato and Aristotle in the 4th and 5th centuries BCE and lasting (in some form) until well into the 16th century CE. Fortunately, it is now dead - although it sometimes pops up in various "alternative" medicine explanations. It was killed by the growing understanding of how the body actually operated.
More recently, we have (through scientific investigation) found that homeopathy is just water (or lactose) and that acupuncture "works" no matter where you stick the needle. And on the way, we have learned that the bleeding, purging and blistering of "heroic medicine" also don't work (and more often kill or injure). We've also learned that electroshock is not a useful treatment for homosexuality (although it does help depression) and that treating alcoholism with morphine and opiate addiction with cocaine is - at best - a short-lived solution.
In short, although there have always been some practitioners who have clung to the old ways, modern medicine (i.e. 20th and 21st century medicine) has been fairly quick to drop therapies that either don't work or that have been superceded by better or safer treatments. The same cannot be said of "alternative" medicine, which - almost by definition - refuses to reject any therapy except (ironically) those used by "mainstream" medicine.
Back to autism therapies.
On the advice of a reader, I went to Dr. Bernard Rimland's "Autism Research Institute" (ARI) website and found the following therapies recommended for the treatment of autism:
DMG (dimethly glycine, Betaine) - Among the benefits claimed for DMG are:
"For over 20 years ARI has been hearing from parents who have tried DMG on their autistic children. In many cases remarkably good results have been seen, especially in enhancing speech."
"Many parents have reported that, within a few days of starting DMG, the child's behavior improved noticeably, better eye contact was seen, frustration tolerance increased, the child's speech improved, or more interest and ability in speaking was observed."
"In some cases, drug-resistant seizures have been stopped by DMG. (See New England Journal of Medicine, 10-21-82, pgs 1081-82)." [also see Epilepsia. 1989 Jan-Feb;30(1):90-3, which found no effect]
"Many studies have shown that DMG enhances the effectiveness of the immune system, improves the physical and athletic performance of humans and other animals (e.g. race horses) and has, all in all, a very wide range of beneficial effects." [no references given]
A quick stroll through MedLine revealed that a few clinical trials (as opposed to parental anecdotes) have been completed on DMG. Their results:
[1] A study of 37 autistic children 3 - 11 years of age -
"...the quantitative changes in the dimethylglycine behavioral assessments were not significantly different from what was observed among children who received placebo."Kern JK, Miller VS, Cauller PL, Kendall PR, Mehta PJ, Dodd M. Effectiveness of N,N-dimethyl-glycine in autism and pervasive developmental disorder. J Child Neurol. 2001 Mar;16(3):169-73.
[2] A pilot study of eight autistic people 4 -30 years old (small number, large age spread!) -
"Analysis of all three scales revealed no statistically significant differences, and parent reports were equally distributed."
Bolman WM, Richmond JA. A double-blind, placebo-controlled, crossover pilot trial of low dose dimethyl-glycine in patients with autistic disorder. J Autism Dev Disord. 1999 Jun;29. (3):191-4.
[3] A review of the performance-enhancing effects of DMG (NB - Pangamic acid is a combination of DMG and calcium gluconate):
"Multivariate analysis of variance (MANOVA) revealed no significant differences (P greater than 0.05) between groups after treatment. It was concluded that ingestion of pangamic acid does not produce significant changes in short-term maximal tread-mill performance."
Gray ME, Titlow LW. The effect of pangamic acid on maximal treadmill performance. Med Sci Sports Exerc. 1982;14(6):424-7.
[4] Finally, a claim that has been substantiated - in one study:
"A double-blind study in 20 human volunteers showed a fourfold increase in antibody response to pneumococcal vaccine in those receiving DMG orally as
compared with controls (P less than 0.01)."
"The in vitro responses of lymphocytes from patients with diabetes and those with sickle cell disease to phytohemagglutinin, convanavalin A, and pokeweed mitogen were increased almost threefold after addition of DMA [sic]. These results suggest that DMG enhances both humoral and cell-mediated immune responses in humans."
Graber CD, Goust JM, Glassman AD, Kendall R, Loadholt CB. Immunomodulating properties of dimethyl-glycine in humans. J Infect Dis. 1981 Jan;143(1):101-5.
This sounds like a great deal until one considers the many people claiming an autoimmune component to autism. Would increasing the immune response be such a good idea, if this is the case?
Vitamin B6 and Magnesium
This one goes 'way back - back to when Dr. Rimland was a contributor to Linus Pauling's book "Orthomolecular Psychiatry: Treatment of Schizophrenia". On the ARI website, the following claims are made about the therapy:
"All 18 studies known to me in which vitamin B6 has been evaluated as a treatment for autistic children have provided positive results. This is a rather remarkable record, since the many drugs that have been evaluated as treatments for autism have produced very inconsistent results." [this study must be the 19th study on B6 and magnesium]
A number of anecdotes are also relayed, although the results of Dr. Rimland's largest (and earliest that I can find) B6 and magnesium study are only briefly mentioned in passing. This study, which apparently involved over 200 autistic children, was mentioned in the book "Orthomolecular Psychiatry: Treatment of Schizophrenia" (Hawkins and Pauling, eds). Although I have not yet received a copy of the book (through the miracle of interlibrary loan), a previous reading of the chapter by Dr. Rimland disclosed to me a revealing aspect of the study.
Some of the children in this study were institutionalized and Dr. Rimland found that these children had a much lower improvement rate. Although he did not test for compliance (by testing the urine, as he did in later studies), Dr. Rimland's assumption was that the staff of the institutions were not being compliant because they didn't believe that the therapy would be effective.
Interestingly, my (extremely limited) experience with long-term care facilities (as institutions are now called) is that once a medication order is written, it will be carried out religiously - sometimes in the face of ample reason to stop giving it. I find it odd, therefore, to blame institutional non-compliance for the poor results in these children. An alternative hypothesis is that the staff of the institutions did not have a "stake" in the outcome and so were more objective.
Secretin
The secretin story is pretty much a classic for alternative medicine. The story begins in April 1996, when an autistic child underwent an endoscopy and received - as is routine - an injection of secretin to confirm the continuity of the pancreatic duct (it causes pancreatic juice to squirt out of the duct, which can easily be seen during endoscopy). Following this procedure, he demonstrated "remarkable" improvement in language and social skills. His mother, Victoria Beck, determined that the only medication he had received that could be responsible for this improvement was the secretin.
Ms. Beck not only wrote a book (Confronting Autism) on the subject of secretin and autism, she (and Dr. Rimland) patented the treatment. This patent was subsequently sold to the Repligen corporation, which proceeded to make secretin (human secretin, using recombinant technology) and test it on autistic children.
Interestingly, part of the sale included Repligen stock - Ms. Beck reportedly donated her portion to the Autism Research Institute (run by Dr. Rimland out of his home), as did Dr. Rimland. So the Autism Research Institute has a financial interest in making secretin "work" for autism, since that product promised to be Repligen's biggest seller.
This story "broke" in early October 1998, after appearances by Ms. Beck on "Dateline" and "Good Morning America". The demand was so great that the one company making secretin - Ferring - was sold out by October 16th. In late 1998, Dr. Rimland recorded in the ARI Newsletter that:
"The good news is that confirmatory evidence of the power of secretin keeps coming. A national newspaper told of Florida pediatrician Jeff Bradstreet's own four-year-old son, Matthew, shocking his parents by holding his first normal conversation with them the day after his first secretin infusion. And Virginia pediatrician Lawrence Leichtman told me of his 'miracle case:' a five-year-old who had previously said only two words amazed all in the office by saying, 15 minutes after his infusion, 'I am hungry. I want to eat.' Most cases are much less dramatic, but the autism world is excited, and for good reason."
Many of the initial clinical studies on secretin were promising, but only small numbers of patients were treated in these studies. The clouds began to gather when larger, more rigorous studies were done, including Repligen's own studies to earn an FDA-approved indication for autism.
One of the first "bad news" studies was the following:
Lack of Benefit of a Single Dose of Synthetic Human Secretin in the Treatment of Autism and Pervasive Developmental Disorder. Adrian D. Sandler, M.D., Kelly A. Sutton, M.A., Jeffrey DeWeese, B.S., Mary Alice Girardi, P.N.P., Victoria Sheppard, M.D., and James W. Bodfish, Ph.D. N Engl J Med. 1999 Dec 9;341 (24):1801-6.
This study looked at 60 autistic children and found:
"As compared with placebo, secretin treatment was not associated with significant improvements in any of the outcome measures. "
and
"After they were told the results, 69 percent of the parents of the children in this study said they remained interested in secretin as a treatment for their children. "
The last quote forshadowed the events to come.
Dr. Rimland responded quickly to this first setback with an article in the ARI Newsletter titled: "Secretin: positive, negative reports in the 'top of the first inning' ". But the bad news just kept coming.
[April 200] - "Results of both inquiries indicate that although treatment with secretin was reported to cause transient changes in speech and behavior in some children, overall it produced few clinically meaningful changes when compared to children given placebo injections."
Secretin and autism: a two-part clinical investigation.Chez MG, Buchanan CP, Bagan BT, Hammer MS, McCarthy KS, Ovrutskaya I, Nowinski CV, Cohen ZS. J Autism Dev Disord. 2000 Apr;30(2):87-94
[May 2001] - "A single dose of intravenous secretin does not appear to have significant effects on either parents' perception of autistic behaviors or language skills at 6 weeks after injection. Transient, marginally significant improvements in autistic behaviors may occur in some children."
A randomized, double-blind, placebo-controlled trial of single-dose intravenous secretin as treatment for children with autism. Coniglio SJ, Lewis JD, Lang C, Burns TG, Subhani-Siddique R, Weintraub A, Schub H, Holden EW. J Pediatr. 2001 May;138(5):649-55
[May 2001] - "No evidence is provided for the efficacy of repeated doses of porcine secretin in the treatment of children with autism."
Repeated doses of porcine secretin in the treatment of autism: a randomized, placebo-controlled trial. Roberts W, Weaver L, Brian J, Bryson S, Emelianova S, Griffiths AM, MacKinnon B, Yim C, Wolpin J, Koren G. Pediatrics. 2001 May;107(5):E71
[November 2001] - "There was no evidence for efficacy of secretin in this randomized, placebo-controlled, double-blind trial."
Multisite, double-blind, placebo-controlled trial of porcine secretin in autism. Owley T, McMahon W, Cook EH, Laulhere T, South M, Mays LZ, Shernoff ES, Lainhart J, Modahl CB, Corsello C, Ozonoff S, Risi S, Lord C, Leventhal BL, Filipek PA. J Am Acad Child Adolesc Psychiatry. 2001 Nov;40(11):1293-9.
[November 2002] - "No evidence that either biologic or synthetic secretin provided amelioration of symptoms beyond placebo was observed. This held true when children with and without gastrointestinal problems were examined separately."
A randomized, double-blind, placebo-controlled trial of porcine versus synthetic secretin for reducing symptoms of autism. Unis AS, Munson JA, Rogers SJ, Goldson E, Osterling J, Gabriels R, Abbott RD, Dawson G. J Am Acad Child Adolesc Psychiatry. 2002 Nov;41(11):1315-21
[December 2002] - "The results of this study do not support secretin as a treatment for autism."
Lack of benefit of intravenous synthetic human secretin in the treatment of autism. Molloy CA, Manning-Courtney P, Swayne S, Bean J, Brown JM, Murray DS, Kinsman AM, Brasington M, Ulrich CD 2nd. J Autism Dev Disord. 2002 Dec;32(6):545-51.
[August 2003] - "In a controlled setting, parents of young children with autism are unable to distinguish the short term behavioural effects of secretin from placebo."
Children with autistic spectrum disorders. II: parents are unable to distinguish secretin from placebo under double-blind conditions. Coplan J, Souders MC, Mulberg AE, Belchic JK, Wray J, Jawad AF, Gallagher PR, Mitchell R, Gerdes M, Levy SE. Arch Dis Child. 2003 Aug;88(8):737-9.
In 2004, the Repligen Corporation - partway through a Phase III study of secretin for autism - threw in the towel because the initial results were unfavorable. This should have been the end of it...but it wasn't. For full details, read Dr. Rimland's impassioned letter to the CEO of Repligen. The Autism Reseach Institute still claims that secretin is an effective treamtment for autism.
And don't miss Dr. Rimland's complaints about the double-blind, placebo-controlled method.
Conclusion
After reading all this, I was left to wonder how parents can continue to listen to the recommendation of people like this (and ARI is far more scientific and reasoned than some of the others). Of course, much of the reason is that the parents don't know the history of some of these treatments - they only know what the organizations like DAN! (tied with ARI) tell them unless people like me can get to them.
The practitioners who follow these therapies are the ones I have the most concern for (and about). The parents have only been exposed to this for a relatively short time, while the practitioners must have seen some of these therapies rise and fall. They must either have a severe memory disorder or be able to tolerate near-fatal amounts of cognitive dissonance. Either way, I think that there is a problem.
Prometheus
posted by Prometheus at 10:00 AM
20 Comments:
You missed one.
See this comment on my blog. The guy claims these thought screen helmets protect against aliens and autism. Quite a find, I’m sure you’ll agree.
Darn! Missed that one!
Thanks, Skeptico, for the info.
In reality, there are are many more autism "therapies" than I could ever hope to address. And there are more every day. I hope that most people can spot the obvious wacko "therapies" (e.g. the thought screen helmets), so I'll put my effort into the less obvious ones.
Prometheus
Great entry... From my experience there is no limit to what can be considered a cure nor even a cause.
On the listserv I was on for several years one grandparent asked me if my son's problems were caused by the "back to sleep" campaign to reduce SIDS. I told her that my son was born well over 5 years BEFORE that advice was saving babies.
Even BEFORE I has internet service I once saw one wacky mom shine a special light on her child's food before she gave it to him. (note on nuttiness... she treated her son like a daughter and called him a feminine nick-name, to the consternation and irritation of the father!).
I am never surprised at what I see.
Also... I suspect the comment on Skeptico's website is a joke. The website looks humorous.
Great post. I have always been amazed at the sheer number of different therapies that parents of ASD children have to wade through in order to actually get to some real science. Shine green light on the child, drink high Mg and vitamin B solutions, transdermal chelation, oral chelation, IV chelation, natural chelation, eat algae, drink RNA drops, inject secretin, kill the fungal overgrowth, go GCF diet, audio therapy, brushing/bouncing sensory therapy, IR saunas, don't drink fluoridated water, don't injest nutrasweet, try HBOT, bathe in epsom salts, don't vaccinate, put magnets in shoes, bathe in volcanic ash-containing dirt, and aromatherapy.
Snake oil and the accompanying salesmen are the real disease.
You mean the volcanic ash thing is bunk?
Tabula Rasa
The amnesia stems from a fresh supply of impressionable minds. Each year brings a new crop of confused parents looking for answers on the internet. They are either incapable of understanding the science, they don't have the time or attention span to try to understand it, or a little of both. Just give me the first search engine optimized promised cure so I can cope with the bad news. No one remembers the wacky ideas and treatments from even two years ago because the most vocal parents are neophytes.
Like Heavy Metal music, chelation remains popular because thinking isn't a requirement.
A nice freeware tool, in case you're like me and didn't know about it.
http://scholar.google.com/
Autism 'treatment' falls under the smorgasboard gambit.
Basically, whenever a research or treatment entity makes the claim that "every child is different" and that "different things work for different kids", they are really saying that "we'll keep trying different things until your child improves naturally, and then claim the thing your child was taking at the time was the reason for the improvement."
Thus why folks like Buttar are now having to branch out from TD-DMPS - it apparently isn't working in everyone, so there must be some OTHER protocol that works for some kids, and if that doesn't work, we'll try some other new protocol. Something will "work".
I don't think the case against B6-magnesium is as strong as you portray. Take a look at this
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15673999&query_hl=4
which offers a slightly different viewpoint. The study you cited only had 6 children complete - a pretty small sample. The above study is also small (20). Given that vitamin supplements are very low risk, and low cost compared with most of the other therapies out there (e.g. IV chelation) I think it is worthwhile to give them a try.
Here's another really expensive "cure" for autism for your amusement. Not so amusing for the parents who spent thousands of dollars on this.
http://www.specialfoods.com/CIP-Aut-Env.html
From that specialfoods website,
-------
50 Years Ago
Children played with balls of leather;
Now
Children play with plastic and synthetic balls;
-------
The jokes just write themselves. I guess I was a naturopath.
About the Journal of Alternative and Complementary Medicine article noted above - nothing to do with Mg at all. Conclusions: autistic cohort has higher physiological B6 levels than the control. Their solution: give them more B6.
To Anonymous:
The article you referred to from the Journal of Alternative and Complementary Medicine was rather muddled.
They checked vitaminB6 levels before and vitamin C levels after B6 supplementation and found that the autistic children had higher levels of vitamin B6 before treatment and concluded that it was due to low pyridoxal kinase levels.
I will have to get the paper to see what reference they gave for the statement that low pyridoxal-5-phosphate levels (and presumably low pyridoxal kinase levels) have been found in autistic people, since I cannot locate a single reference to that on MedLine, BioSys or Web of Science. I wonder if Dr. Adams is quoting "unpublished data".
At any rate, the results are not entirely unambiguous.
Prometheus
The basis of the use of DMG ( or TMG) is related to the methionine cycle, where also MethylB12 and B6 are involved.
Jill James et al Am J Clin Nutr 2004, 80, 1611.1617
http://www.clinchem.org/cgi/content/abstract/51/5/891
In part of the cycle of methionine TMG transfers a methyl group and becomes DMG. The rationality of the use of this is a possitive reinforcement of the methionine synthesis, if needed. Checkings of homocysteine/methionine levels are important, as the paper of JAmes et al. reported.
Not all children with ASD present problems with this particular pathway, following parental reports ( and in this sense anecdotical; I agree)and some published reports
Ma Luján
Maria,
Fascinating hypothesis - is there any data showing that any of this actually happens?
Much of what I have read or heard about the various "alternative" hypotheses of "what causes autism" and "what cures autism" consists of a number of interesting biochemical or physiological "facts" strung together in a "plausible" fashion ("string of pearls") but entirely lacking in any data to support connecting them.
In the two papers you cite (the web address you gave was to a second, unrelated paper by Dr. James), there is no mention of either DMG or TMG, so I'm not sure what the point of citing them was.
In case it was missed, the SJ James et al paper cited showed that it was possible to "correct" certain biomarkers of oxidative stress (although they might also be biomarkers of something else - that was not explored) by injecting methylcobalamine. However, they did not report any improvement in any of the signs or symptoms of autism in any of the treated children.
I also have some concerns that the only clinician involved in performing the "treatment" was James Neubrander, who has a significant stake in showing that this sort of "alternative" autism therapy is useful. What about his inherent conflict of interest? Is it not possible that he tried to help the project along by, say supplementing them with methionine or N-acetyl cysteine (NAC)or "suggesting" it to the parents? I'm not making accusations, just pointing out what is possible - much like the supporters of B12, TMG and DMG therapy.
Prometheus.
Prometheus
The point about B6, B12, Methionine cycle is this, a point in the , as you say, possible biochemical imbalances that CAN be tested, for example with the levels of homocysteine/methionine in blood. I would never say about this imbalance in the methionine cycle causes autism or that supplementation can "cure" autism.
Methyl B12 oral can heal B12 defficiency such as TMG supplementation CAN lower high homocysteine levels. POINT.
I always separate what someone says about biochemistry/physiology of what he/she wants to sell as TREATMENT if any. I have never injected MethylB12 in my son, BUT he demonstrated low B12 and high homcysteine so oral methylB12 supplementation was my election under my son´s doctor advice.
Perhaps you can be interested on this possible biochemistry and some links related. If not sorry if I disturbed you.
María Luján
Ms. Lujan,
Do not worry about disturbing me - I would not have started this blog if I was easily disturbed.
Your comments bring up another issue in the "alternate" research in autism. Finding an abnormal physiological parameter (e.g. low B12 level) in autistic people is not the same as finding a cause or a potential therapeutic intervention - despite all the "orthomolecular" rumors to the contrary.
The low vitamin B12 and elevated homocysteine levels you reported are certainly of interest, but they are not necessarily related to autism. Although elevated blood homocysteine levels have been found in renal failure, diabetes and cardiac disease, there is still no consensus (that I know of) whether an elevated homocysteine level causes disease, is a marker of certain types of disease or is a co-traveler with certain disorders.
In fact, high homocysteine levels have been reported in association with low B12 levels, so it may be no more than a vitamin B12 deficiency. Of note, folate deficiency is also associated with high homocysteine levels.
I admit to being a bit confused by the association between autism and B12/folate/homocysteine that I assumed you were making, since the topic was autism therapies. To be frank, treating a vitamin B12 deficiency with vitamin B12 is not exactly a novel therapy. And there is no reason to use injectible vitamin B12 (with its increased cost and discomfort) in the absence of a documented problem with absorption.
While DMG (and the more expensive TMG) can provide the necessary methy group, so can vitamine B12. In the absence of a deficient or absent enzyme, either will work.
Again, since the topic was autism therapies, I'm not sure how treating elevated homocysteine levels with DMG is relevant.
Prometheus.
Prometheus
As you say, the topic is autism therapies. After reading a lot of Basic research about anecdotal and published literature, I do think several things.
Please allow me a short presentation to your post and forgive me because - a shortcoming from ME- I have the tendency of LOONG post, as you know :)
1-There are a lot of subgroups diagnosed under the DSMIV as ASD
2-There are several coetiologies to the root problem that surely are genetically related in the sense of Lesch Nyan, Tuberous sclerosis, Histidinemy, fragile X, Angelman, ("purely genetic" ) to genetic susceptibility-not deterministic but that provides a weakness ( metabolic, enzymatic, immune, etc).
Please accept these for a while and do not read the treatment section, but three links I am including- forget the commercial, the controversial people, look at what they present as basic science AND anecdotical report plus some published mansucripts, not who they are or what they sell
a-www.autismwebsite.com/ari/dan/pangborn.htm
b-http://www.autismanswer.com/pathway_diagrams.html see please from 1 to 6
c-http://www.autism.org/mcginnis.html
So my personal approach is to try to rationalize this to test safely my son to confirm/discard coetiologies and to treat them properly. In this way, I am treating his ASd and I am not treating his ASD. Being genetic the predisposition I can not treat or "cure" his autism, but I can heal after safe testing the coetiologies (celiac disease, vitamin imbalances, hypothyroidism, immune defficiencies-IgA total and secretory, vitamin A defficiency, Se defficiency ,and yes, toxicity from heavy metals and metals, teeth cavities and weakness, Natural killers defficiency etc etc etc). My son has not "pure genetic " problems.
MAría Lujan
Paper from Life Science
High levels of homocysteine and low serum paraoxonase 1 arylesterase activity in children with autism
Sergiu P. Paşcaa, b, Bogdan Nemeşa, Laurian Vlasec, Cristina E. Gagyic, Eleonora Droncaa, Andrei C. Miud and Maria Droncaa, ,
aFaculty of Medicine, Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, CJ 400023, Romania
bCenter for Cognitive and Neural Studies (Coneural), Cluj-Napoca, CJ 4000504, Romania
cFaculty of Pharmacy, Iuliu Hațieganu University of Medicine and Pharmacy, Cluj-Napoca, CJ 400023, Romania
dProgram of Cognitive Neuroscience, Department of Psychology, Babeş-Bolyai University, Cluj-Napoca, CJ 400015, Romania
Abstract
Autism is a behaviorally defined disorder of unknown etiology that is thought to be influenced by genetic and environmental factors. High levels of homocysteine and oxidative stress are generally associated with neuropsychiatric disorders. The purpose of this study was to compare the level of homocysteine and other biomarkers in children with autism to corresponding values in age-matched healthy children. We measured total homocysteine (tHcy), vitamin B12, paraoxonase and arylesterase activities of human paraoxonase 1 (PON1) in plasma and glutathione peroxidase (GPx) activity in erythrocytes from 21 children: 12 with autism (age: 8.29 ± 2.76 years) and 9 controls (age: 8.33 ± 1.82 years). We found statistically significant differences in tHcy levels and in arylesterase activity of PON1 in children with autism compared to the control group: 9.83 ± 2.75 vs. 7.51 ± 0.93 μmol/L (P ≤ 0.01) and 72.57 ± 11.73 vs. 81.83 ± 7.39 kU/L (P ≤ 0.005). In the autistic group there was a strong negative correlation between tHcy and GPx activity and the vitamin B12 level was low or suboptimal. In conclusion, our study shows that in children with autism there are higher levels of tHcy, which is negatively correlated with GPx activity, low PON1 arylesterase activity and suboptimal levels of vitamin B12.
Obviously the group is small, as it is generally in clinical studies. Studies with a higher number of patients are needed.
MAría Luján
I believe traditional medicine, like traditional chinese medicine, "Balancing the humors" and homeopathy are of much value for people's health. To suggest that these approches are unscientific or useless based on the lack of complete understanding of the treatments is unscientific. On the other hand, many conventional and widely practiced treatments, such as certain surgeries and their benefits often have not been proven scientifically.
I do not suggest that traditional medicine neccessarily offers help for "autism" nor that "autism" is an ilness in need of treatment.
To Tunnelblick,
The key part of your post was the phrase "I believe". Do you have any data to support this belief, or is it purely a subjective "feeling"?
You mention that "many" conventional medical practices have not been scientifically proven, which I grant you. How many of the practices of "traditional" medicine, homeopathy and "balancing the humors" have been scientifically proven? In fact, those that have been studied have been largely disproven.
Prometheus.
In the vein of Prometheus’ blog post, without having to go back to and argue ALL the primary literature, I thought that these articles also give good summings up of quite a few of the extant alternative/complementary therapies out there; esp. in relation to ASD---and the state of the evidence, as well as what single-blinded, double blinded, unblinded, etc. mean.
I hope that some of you have subscriptions or institutional contracts to access the full articles---the abstracts, as usual, are interesting but insufficient—the full papers are
quite a history and group psychology lesson.
I believe that the first article should be accessible in full format for free.
(BTW--I don't have the savvy to put in the hyperlinks directly, but I think cut/paste to browser should work (?) :-).)
Cheers,
Regan
Alternative/Complementary Approaches to Treatment of Children with Autistic Spectrum Disorders,Levy, Susan E. MD; Hyman, Susan L. MD,
Infants & Young Children. 14(3):33-42, January 2002.; (C)2002Aspen Publishers, Inc.
http://www.iycjournal.com/pt/re/iyc/abstract.00001163-200201000-00009.htm
Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2
Entire Issue devoted to discussion of complementary and alternative therapies for developmental disabilities and learning disorders.
http://www3.interscience.wiley.com/cgi-bin/jissue/110547669
Introduction: Novel Therapies in Developmental Disabilities--Hope, Reason and Evidence, S.L. Hyman and S.E. Levy; Mental Retardation and Developmental Disabilities Research Reviews; 2005, Vol. 11 Issue 2, p107-109, 3p; DOI: 10.1002/mrdd.20060; (AN 17483953)
http://www3.interscience.wiley.com/cgi-bin/abstract/110547674/ABSTRACT
Novel treatments for autistic spectrum disorders. By: Levy, Susan E.; Hyman, Susan L.. Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2, p131-142, 12p; (AN 17483951)
http://www3.interscience.wiley.com/cgi-bin/abstract/110547676/ABSTRACT
Placebo effects in developmental disabilities: Implications for research and practice. By: Sandler, Adrian. Mental Retardation & Developmental Disabilities Research Reviews, 2005, Vol. 11 Issue 2, p164-170, 7p; DOI: 10.1002/mrdd.20065; (AN 17483948)
http://www3.interscience.wiley.com/cgi-bin/abstract/110547673/ABSTRACT
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