Who Remembers Secretin?: Let the Parent Beware When Seeking Treatments for Autism
December 23, 2007 by Kristina Chew, PhD
Filed under Health
According to Management of Children with Autism Spectrum Disorders, a clinical report released in November by the American Academy of Pediatrics (AAP), the use of complementary and alternative medicine (CAM) is “common” in treating autistic children:
Levy et al reported that by the time their clinical population received a formal diagnostic evaluation for a suspected ASD, almost one third of the children already had received a complementary or alternative therapy, and a survey conducted in a predominantly white, middle-to-upper socioeconomic-status private-practice population found that 92% of parents who responded had used CAM therapies for their children with ASDs. Another recent parent survey found that 52% of the children with an ASD had been treated with at least 1 CAM therapy, compared with 28% of a group of control children without disabilities. Surveys indicate that only 36% to 62% of caregivers who used CAM therapies for their children with ASDs had informed the child’s primary care physician, although more information on CAM is something that families indicate that they want from their child’s primary health care professionals.
When my son was just diagnosed at the age of 2 in the summer of 1999, the DAN! (Defeat Autism Now!) Protocol was in its first edition; Karyn Seroussi was talking about how she had recovered her son from autism using the gluten-free casein free diet; Biological Treatments for Autism and PDD by William Shaw had a yellow cover; biomedical treatments were the new and somewhat maverick thing to try. Autism was being redefined as no psychological or psychiatric disorder, but as a medical—a biomedical—a biological condition. So did an article in the “fringe medical journal” Medical Hypotheses seek (notoriously) to recast autism as a “novel form of mercury poisoning,” as Autism News Beat reminds us in a recent post. (Safe Minds, an organization which is one of the main advocates for the autism-mercury theory makes the entire article available on its website.)
We tried some things, thought we saw some results, decided not to try more things; all the while, teaching Charlie was the main focus. We wanted to try Charlie on some supplements but after some unsuccessful and messy attempts to get Charlie to eat applesauce laced with the contacts of various powdery-substance filled capsules, we taught Charlie to swallow pills. (And never again had to worry about purple cough syrup dripping all over the house, as Charlie was now also able to take over-the-counter medications in tablet form: A small revolution, this seemed.)
The December 23rd Pocono Record has a column by Dan Berrett about Snake-oil treatments for autism exploit desperate families; spotting the frauds. The article focuses on Dr. James Coplan, a neuropediatrician whose article Modeling Clinical Outcome of Children With Autistic Spectrum Disorders appeared in Pediatrics 2005. Coplan notes that families are “‘…..looking for people who can offer them hope. They want to go somewhere where someone can offer the promise of a cure.’” “Up to 10 percent” of these treatments for autism are considered “dangerous” by the CDC, Berrett notes. Dr. Coplan offers some suggestions about what to be wary of in accessing practitioners’ claims:
While Coplan was careful not to cite any specific treatment by name, he warned parents to be watchful for certain traits that many have in common with one another…..:
- Our product will never hurt, only help: Quite often, a treatment’s backers will promise that their cure only helps, and cannot possibly harm the user. Scientifically tested medical treatments do not make the same claim.
- Endless applications: Does the product claim to cure a range of illnesses or syndromes? Are they equally adept at fixing metabolic, respiratory, circulatory, neurological and bone problems? Can they cure diseases and genetic disorders alike? “If something sounds too good to be true, it usually is,” Coplan warned.
- Reliance on testimonials: Just like Liza Land Parker’s sister, be wary if anecdotes and testimonials from interested individuals are the only real evidence for the treatment.
- Lack of scientific study: The best scientific evidence is a controlled experiment. That means two sample groups of people with similar mixes of age, gender and socio-economic factors. One gets the treatment, the other does not. Study them before and after treatment is administered. Do the results of the two groups differ? Is this difference statistically higher than what would occur through simple chance?
- Expectation bias: Sometimes, faith and hope that a treatment must work can deceive the patient or parent into seeing benefits where none actually exist. Expectation bias sets in — we see what we expect to see.
Coplan refers to his own experience researching the efficacy of the pancreatic hormone secretin in autistic children as an example of why parents need to be watchful in considering treatments for their autistic child:
Coplan cited his own work as a researcher during the development of secretin, a pancreatic hormone that was rumored to cure autism. The researchers gave one group secretin and the other salt water, without telling parents whose children received which treatment. Coplan asked the parents which one they thought their child received.
“The parents’ guesses were no better than tossing a coin,” he said. “If they were blind to what their kid was getting, they couldn’t tell.”
Those who provide the treatment are lone wolves: “People who are heavily invested in something that is a quack therapy style themselves as underdogs of the conventional medical establishment,” Coplan said. “They almost revel in the role of being oppressed underdogs.”
It’s as if parents have some desire to be the family with the “autism success story,” defined narrowly as the family who was savvy enough and dedicated enough, the family who gave everything, to win the fight against autism. Jenny McCarthy writes that she thought she was to be the one to write about this (specific reference in her book to follow). But, as noted by Dr. Susan Swedo of the NIH in Autism and the Environment:Challenges and Opportunities for Research, Workshop Proceedings (April 2007; p. 249), there is more than a little dispute about what people mean when they say their child is “recovered” from autism. Since the use of CAM and experimental medicine is “common” in “treating” autistic children, it would behoove parents to consider Dr. Coplan’s suggestions and, too, to remember the secretin story, when it was widely touted as a possible “wonder treatment” for autism a few years ago.
How often does anyone hear about secretin anymore?
You and I were “trying things” at the exact same time. When M was six months old, one year old and two we did the diet thing. We even removed most foods and added them in one at a time. We tried Noni juice and vitamins. I only fed her all natural, organics and we used Shaklee laundry detergents and natural cleaning supplies. The list went on and on. Finally, I came to my senses but it took quite a while.
I find I have to be careful even still. If someone is always pushing a product or an idea on me I have learned to be very blunt about it, ask them to stop and sometimes ask point blank what they know about genetics, autism, seizure disorders and ask them to list their experience with doctors, studies and children in this area. Usually shuts them up.
your blog could be subtitled “Sanity in Autism”
Red flags went up for me when the DAN practioner I visited insisted that I buy my supplements from him. Didn’t feel right.
I try to be open. Generally when presented with a potential treatment that would be considered CAM, I ask exactly how it works … Not generally, but specifically HOW it works. Rarely do I receive a thorough, satisfactory answer. I’m torn … I don’t want to miss out on something that might help him. I have many friends who try various things and I constantly observe their kids, hoping for some obvious results. Thus far the only kids I’ve seen “lose their diagnosis” are ones that have been immersed in intensive speech, OT, and behavioral therapies.
So like Ms. McCarthy, I go with my “mommy gut.”
The difference for me: Jack is NOT my science…
This is a fantastic post.
My “mommy gut” story is that we seem to have good results with flaxseed oil. For both of our sons, on flaxseed oil = fewer tics/squealing, less hyperkinetic behavior and emotional lability, more linear conversations, more focus. I’m convinced that although it may be an oil, it’s not snake oil, but of course, I haven’t done any studies.
I just found your blog. I just want to thank you for your intelligence of the issue of Autism. 90% of the people I know in the community are anti-science crusaders that believe that finding that one right treatment will cure their child.
I don’t think they understand what a cure would even look like. They are chasing ghosts.
I was speaking to a doctor who worked in Oregon City the other day. She mention that the local DAN doctor would end up with a child in the ER quite regularly because of chelation therapy.
Maybe they should call it Special Complementary and Alternative MedicineS- I think the acronym is more appropriate
My local autism society newsletter carries a half-page ad for a “compounding pharmacy” each month that lists secretin as one of the things they offer.
“Speculative Complementary and Alternative Medicism.”
:-p
What about AUDITORY TRAINING?!
That was our greatest waste of money!
I bought flaxseed oil, various bottles of omega-3 oils, never used them. I think my biggest waste of money was buying potty-training books for autistic kids.
On the question of secretin, I increasingly hear people saying that the studies showing secretin has no effect on the symptoms of autism were poorly done and that secretin does, in fact, work.
I was a victim of facilitated communication in 1991-nothing else to say
“On the question of secretin, I increasingly hear people saying that the studies showing secretin has no effect on the symptoms of autism were poorly done and that secretin does, in fact, work.”
—————–
J. Coplan, et. al. (2003). Children with autistic spectrum disorders. II: Parents are unable to distinguish secretin from placebo under double-blind conditions. Archives of Disease in Childhood 2003;88:737-739
Aim: To determine the ability of parents of children with autism to guess, under double blind conditions, whether their child had received secretin or placebo.
Conclusion: In a controlled setting, parents of young children with autism are unable to distinguish the short term behavioural effects of secretin from placebo.
Owley, T., et. al. (2001). Multisite, Double-Blind, Placebo-Controlled Trial of Porcine Secretin in Autism. Journal of the American Academy of Child & Adolescent Psychiatry. 40(11):1293-1299.
Conclusion: There was no evidence for efficacy of secretin in this randomized, placebo-controlled, double-blind trial.
Cochrane Database of Systematic Reviews plain abstract
Authors’ conclusions
There is no evidence that single or multiple dose intravenous secretin is effective and as such it should not currently be recommended or administered as a treatment for autism.
http://www.cochrane.org/reviews/en/ab003495.html
Research Autism
“…The theory behind this intervention is weak and unproven.
There is overwhelmingly strong research evidence to show that secretin is not effective in treating autism. On the contrary there are some reports of negative effects in some studies.
Because of this, we cannot recommend the use of secretin for people with autism…
http://www.researchautism.net/interventionitem.ikml?print&ra=8&infolevel=4
Yeah, totally agree with you about secretin. Just saying that I hear about more these days from parents. I do not know where the talk is coming from — certainly not from the scientific literature.
Hi Richard,
. I and my child are old enough to have seen the rise and fall of some of these things, only to be seeing them rise again with a new cohort of parents (who often tell me that I need a more open mind–forgetting that I was once in their shoes and sometimes looking at the same or similar things–as was the cohort ahead of us). I don’t know where the talk is coming from either, but I suspect that there might be someone selling something at the other end.
Just wanted to say that the citations were not taking aim at you
Happy Holidays.
My son was severely autistic we tried therapy that was recommended. Then we found Secretin. After just one infusion (6 weeks worth) the results were miraculous to say the least. He was on it for a few years and then we found he didn’t need it anymore. He is a bright funny kind and thoughtful 12 year old with many friends and a full social life.
My son was severely autistic we tried therapy that was recommended. Then we found Secretin. After just one infusion (6 weeks worth) the results were miraculous to say the least. He was on it for a few years and then we found he didn’t need it anymore. He is a bright funny kind and thoughtful 12 year old with many friends and a full social life.
Very interesting—–another friend of mine has given it to her son, but the results only lasted briefly. Hope your son continues to do well.
we’ve been been giving my previously non verbal 4 year old son homeopathic secretin for two weeks now and he has just started saying words in the past few days, coincidence?? possibly, but we plan to continue to see what happens next.
I remember that time, my pre-computer days. I had that Shaw book in yellow. They gave it for free at some conference I attended. The Foothill Autism Alliance was just being created and now ten years later they have formed an alliance with ASA. The Los Angeles Chapter of ASA had conferences, a library and meetings. Than it changed to another name and disappeared. Now there is a chapter that I am not associated with and not sure what they do.
I had called ARI and spoke with Dr Rimland and ordered the supplement DMG and my kids did not like it, did the E-2 forms for my kids and registered with AGRE and Dr. Smith came for the testing and videotaped me and boys.
I orderd a book by Catherine Maurice on behavior and made copies for preschool teacher and then a few years later sold that and the Shaw book on ebay. I also had the EZ ON vest but never used it, was too hard and sold that too.
After my son had his endoscopy and colonoscopy by Dr. Buie at LADDERS/Mass Gen, he had the first normal/formed stool that was brown, once a day, for the first time in his life at 2.5 years old. He received Secretin as part of the GI scope. When the results were back, Dr. Buie said my son had not only severe acute and chronic colitis and gastritis, but also a partial pancreatic insufficiency. As part of his treatment, not only did he take meds to calm down the inflammatory bowel disease, but he also was prescribed Secretin IV monthly, which helped tremendously. Dr. Buie said he would probably outgrow the pancreatic insufficiency, and Alex did after he was about 4 years old, and his pancreas started producing enough enzymes to help digest his food. (We had tried the prescription enzymes before the Secretin, and he couldn’t tolerate them, they burned his esophagus when put into applesauce, and they are huge “horsepills”, so small kids can’t swallow them.) He only had to take the Secretin then for 14 months, and he has continued on the colitis and gastritis meds and is very stable.
We saw a dramatic difference in Alex after the GI problems were adequately treated. I would not say the Secretin “helped his autism”, rather it helped his overall GI health and stopped the terrible pain he was in, and when his GI tract was functioning well, he was able to learn better. He was telling us by his actions before the scope that he was in pain. I knew he was in pain and I tried to tell many doctors this before Dr. Buie, but they didn’t believe me. Dr. Buie confirmed that many kids have undiagnosed pain from real medical disorders, and they are misdiagnosed as “autistic symptoms” instead of properly working them up and diagnosing and treating these very real medical problems.
I have often wondered if the first children who received Secretin had the same thing happen as what happened to Alex, and they attributed the improvement in language and less stimming, etc, to the Secretin, instead of helping the GI problems, which allowed their kids to be pain free and more able to learn.
Karen
Can oral secretin be purchased and where? I heard there is now a pill.
Where can I obtain secretin for my 16 year old Autistic Son? Need help.