One Part Autism, One Part Denial: A Recipe for Scientific Stagnation
By Katie Wright
Dr. Susan Hyman is the lead autism researcher at the University of Rochester and holds many important posts within the autism research community. One of her main research interests is dietary intervention. At a time in which we desperately need innovative thinkers and original research on this issue, Dr. Hyman has spent 10 years summarizing the work of others as well as conducting a few poorly designed clinical trials. All of Hyman’s studies are virtually the same, reaching the same inconclusive conclusions. Here are some examples. Remember you have paid tens of millions of dollars to learn this information.
2003 “Data supporting complimentary medicine should be scrutinized with scientific study…Families should discuss all proposed interventions with primary care providers.” Tell us something we don’t already know.
2005 “Complimentary medicine used for the treatment of autism is examined in terms of rationale, evidence and efficacy.” Another summary paper, nothing new.
2007 Taste and smell research also inconclusive. “Taste and smell research is needed to determine the neurologic basis of olfactory taste impairments.” No kidding.
2008 “Complimentary medicine commonly used for ASD…Review of current evidence. Some complimentary practices have evidence to reject them whereas others have emerging evidence to support them.” Another summary paper, nothing new.
2010 “There are many possible effects of diet including under and over nutrition that need to be scientifically investigated so families can make informed decisions about their child’s possible therapies.” Right back to the 2003 conclusions.
I still don’t understand how not feeding your child food that makes him sick is “alternative medicine.” The following is an account of how my family made our way to dietary interventions.
No one tells parents that things could actually get a lot worse after the autism diagnosis. My husband and I were told that once we got a high quality ABA/ speech therapy intervention team in place we would see slow, sometimes very slow but certainly steady progress.
Hopefully Christian would regain his speech and other cognitive skills that he had lost in initial regression just months ago.
Well it did not work out that way. After finding some wonderful therapists, my family was distraught as Christian seemed to becoming more autistic with the passing of every day. Along with this latest regression came; what I refer to as the 4 Horsemen of Autism:
Diarrhea,/Constipation, Screaming, Head Banging and Sleepless Nights.
Anyone who has seen his or her child’s diarrhea burn a hole through a rug or a car seat knows what I am talking about. This isn’t about regular constipation either- ASD kids have been known to go weeks without a bowel movement. It’s incredibly painful and disabling. This is how parents end up trying dietary interventions.
After you visit your pediatrician and a GI specialist, chances are you are back a square one after Miralax and w/ a prescription for reflux meds doesn’t do the job. The screaming and diarrhea are still destroying your child’s life, making him unable to learn. Most likely your child’s doctors are out of options at that point. You are on your own- you always were but know you really know it.
Reluctantly you try the GFCF diet or the SCD diet. It seems like a huge pain but you probably recognize your child’s symptoms in books by Karyn Seroussi, Elaine Gottschall or Julie Matthews and decide to give it a shot. Along w/ the wheat and cow’s milk you remove all processed food, sugar, artificial sweeteners, artificial dyes, pesticide treated fruits and vegetables, excessive salt and hormone injected beef and chicken. Isn’t it funny that the AAP and so many autism researchers are worried about kids who don’t eat this garbage? Ask any parent what their ASD kid was eating BEFORE the diet and I guarantee you a scary answer. Time to join us on planet Earth Dr. Hyman, the diet of the average American kid is atrocious, the typical autistic kid even worse.
Post GF/CF I saw an immediate improvement on the diarrhea front. Christian went from experiencing 10 bowel movements a day to four. His bowel movements were so much less acidic and lost their power to burn through rugs! After a few months Christian’s horrible eczema was 90% better. There were no more hideous, virtually untreatable rashes all over his body. Quelling the itching also helped Christian get to sleep at night. Eliminating high oxalate foods also reduced the candida problem. No more hysterical laughing and clapping at night! Other parents report everything from no improvement at all to the rare, but real, amazing recoveries. My son’s result is typical, Christian still has autism and inflammatory bowel disease but he isn’t living in pain. Christian is so much healthier, no more painful rashes all over his body, no more hugely bloated tummy and no more disabling diarrhea.
The subgroup of kids who are most likely to benefit from the diet are those w/ GI problems, allergies, severe eczema and even autoimmune problems. These problems are not as obvious as celiac disease but the children have many of the same symptoms and sensitivities. I would refer Dr. Hyman to the work of Dr. Alessandro Spano regarding how the gut of ASD kids respond to certain foods. When Dr. Hyman gathered her subjects for a diet intervention study who did she eliminate from participation? Yes, Dr. Hyman eliminated all children w/ GI problems and allergies. So Hyman’s dietary intervention study was like an insulin intervention project on people without diabetes. Purposeless and sad.
Hyman’s GI study also did not eliminate sugar, processed foods, artificial colorings, ingredients, corn or soy. It was hardly a dietary intervention at all. This study was undertaken in 2003, not 1903, a great deal was already known about how some of these foods and additives negatively impact all children, especially autistic kids. At least half of the children in the original group dropped out of the study. That is appalling on many fronts. Primarily it illustrates that the research team choose their subjects poorly or did not adequately stay engaged w/ the parents. From what I understand this was a multi million dollar study. So much for a return on the taxpayers’ investment. In the end only 13 children completed the study- a truly dismal outcome.
The authors of this sad study argue that so many parents dropped out of the study because the diet was too hard. Maybe. What about the another possibility? What if even one of the parents dropped out because they did not like the changes that resulted from the challenges and opted to undertake a real GF/CF diet? I know that the testing examiners found no cognitive differences between the test and control groups, but physical changes are subtler and sometimes slower to emerge.
However, the major problem with the study is how the authors specifically removed all children who were most likely to benefit from the intervention. The crazy reasoning goes as such: because children w/ GI problem and allergies were “sick” it would be unethical to enroll them in the study. I asked Dr. Hyman why it was “unethical” to enroll this subpopulation in the study if they were not already utilizing any special diet? How would this study be any different from clinical trials of abilify, risperdal or the SSRIs regularly tested on autistic children. There doesn’t seem to be an “ethical” problem using powerful off label anti-psychotic drugs on autistic children, it happens all the time! However, replacing cow’s milk with more easily digestible calcium sources and eliminating all processed foods in favor of a healthy diet is “dangerous.” On what planet?
I can’t be the only one who saw “Food Inc”! The importance of eating whole foods and seasonal organic fruits and vegetables is not a “fringe” issue. Michael Pollan’s books are runaway bestsellers.
What is going on in Rochester? Is Hyman’s research team even aware of the recent study finding that children who ate non organic fruits and vegetables were FOUR TIMES more likely to have ADHD? I wonder who financed Hyman’s dietary intervention study- MacDonalds, Taco Bell, factory farms, Archer Daniel Midlands, crop dusters? Just kidding, it was those geniuses at the NIH. Figures, right?
A day prior to IMFAR I came across a very disturbing e-mail written by one of my heroes, Karyn Serossi author of “Unraveling the Mysteries of Autism and PDD.” After reading literally a dozen autism books and finding nothing relevant to my son’s ASD trajectory (regressions) or his medical problems, thankfully I found Seroussi’s book in 2003. You know when you read an autism book and are thinking to yourself- or shouting out loud as I did- “that’s right!” “My son had the fevers too” “Yes! My son was on antibiotics before his regression too” and “Yes! Christian was totally addicted to milk too!” That book was the first step towards understanding how my son’s diet was connected to his diarrhea and severe eczema and how to help him. The result was a impressive alleviation of his most painful symptoms. I am not alone, hundreds of thousands of kids have been helped by Seroussi’s work. |
So back to the e-mail. In a letter to Dr. Hyman, Karyn writes how utterly disappointed she was to being cut from the research team after suggesting remedies for the obvious flaws in the study design. Karyn had pointed out that excluding “GI” or “allergy” kids was a mistake and that the diet itself was not the one most parents were using. Apparently the researchers did not appreciate thoughtful input from a parent and expert ASD nutritionist. Team Hyman was determined to carry out their lousy study just had they designed it; in order to find what they believed they would find? In any event the removal of Karyn Seroussi from the team smacks of censorship, anti parent arrogance and agenda driven science.
After paying an unbelievable $575 to attend one day of IMFAR (thanks again for that parent discount-not) Lyn Redwood and I took seats in the front row of Dr. Hyman’s presentation. The room was packed. I felt badly for Lyn, who sat next to me. I was getting some pretty angry looks. Bring it on. After paying $575 I wasn’t going anywhere.
I was shocked at the lack of participation or curiosity on the part of the audience. If Hyman had given this lecture at a DAN! or NAA conference the line for questions would have been a mile long! I guess that demonstrates the difference between those living with these children and those who only read about them in poorly done scientific studies. My first question was why Dr. Hyman conducted a dietary intervention study on children who probably did not need a dietary intervention? My second question was what kind of GFCF diet allows sugar, processed food, artificial dyes and additives? My third question was why was author, parent and ASD dietary expert Karyn Seroussi fired from the study after she pointed out these flaws? My forth question was why were children with allergies, severe eczema (classic symptom of dairy intolerance) excluded from the study when they are most likely to show a benefit? I would have been happy to keep asking questions but “we ran out of time.”
This Hyman study was extremely expensive and look what we got for our money- nothing. Remember when your parents would tell you, “it isn’t how much money you have that is important, but how you spend it.” At the time I was thinking, yeah, right, how dumb.
However, it is so important that our research money be spent more wisely. We need to invest in scientists with original ideas, rather than agendas. We need scientists who welcome parent collaborations, rather than fear them. We need research teams who welcome debate and discussion, rather than engage in censorship. In short, we need research that represents the opposite of everything about the Hyman study.
Please see Karyn Seroussi’s link to all the GI/dietary intervention science (HERE). These are the scientists toiling away with tiny budgets and little fanfare. Few autism organization scientists have even read any of this. Take a look and forward it to anyone who takes this Hyman study seriously. These authors are really asking the hard questions, doing solid, unbiased research and bravely pushing the science forward.
Katie Wright Is a Contributing Editor for Age of Autism.
Dear Katie,
whenever I see that you have written a new piece, I know I have to read it. You always nail the issue and, as sad as your topic is, you make me laugh out loud. I think it is so important that someone makes sense in this world of bogus, uninformed and non-caring doctors. Somebody needs to put in words what we are all thinking and I am so thankful that for me, that someone is you!
Keep at it,
Anja
Posted by: Anja | June 09, 2010 at 12:02 PM
Happy meal and vaccines
move along
Posted by: Lisa @ TACA | June 09, 2010 at 01:31 AM
Katie - thank you for your boldness and standing up for our kids! These so called research studies are such a load of crap. Eight days off of wheat and my non-verbal "high functioning" autistic son spoke. No one can tell me the diet does not work when we see our children getting better. You are what you eat and you would think the mainstream medical community would get this.
Posted by: KKauffman | June 08, 2010 at 11:38 PM
Trevor;
I would be scared to give these people my real name. It is like they can not understand common, logical thought.
That long answer that was given to you - using big words and those words in stange arrangements reminds me of when Glenn Beck (don't know if you watch him any) puts a pipe in his mouth and tlkes in a nasal voice doing a very good imitation of a condesending guy that thinks he is better and smarter than anybody else.
Posted by: Benedetta | June 08, 2010 at 11:27 PM
P.S. to Kim, you always find the perfect picture.
Posted by: Twyla | June 08, 2010 at 09:36 PM
Katie, I love the way you write -- and all that you have to say -- and your advocacy!
Posted by: Twyla | June 08, 2010 at 09:31 PM
Another great one Katie. Damn! I so look forward to the obligatory waste of money Ped physical this summer just to hand this one over to the Dr.
Posted by: scienceisforsale | June 08, 2010 at 09:25 PM
About the study on vaccines given on schedule, this study does not take into account findings of other carefully done studies;
As usual, an extremely poorly designed study.
No studies on biochemical/metabolic and mitochondrial impact of vaccines- separately. The core of the situation is to compare vaccinated preterm vs non- vaccinated at all.
BMC Pediatr. 2006 Jun 19;6:20.
Frequency of apnea, bradycardia, and desaturations following first diphtheria-tetanus-pertussis-inactivated polio-Haemophilus influenzae type B immunization in hospitalized preterm infants.
Lee J, Robinson JL, Spady DW.
Stollery Children's Hospital and Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
Adverse cardiorespiratory events including apnea, bradycardia, and desaturations have been described following administration of the first diphtheria-tetanus-pertussis-inactivated polio-Haemophilus influenzae type B (DTP-IPV-Hib) immunization to preterm infants. The effect of the recent substitution of acellular pertussis vaccine for whole cell pertussis vaccine on the frequency of these events requires further study. METHODS: Infants with gestational age of < or = 32 weeks who received their first DTP-IPV-Hib immunization prior to discharge from two Edmonton Neonatal Intensive Care Units January 1, 1996 to November 30, 2000 were eligible for the study. Each immunized infant was matched by gestational age to one control infant. The number of episodes of apnea, bradycardia, and/or desaturations (ABD) and the treatment required for these episodes in the 72 hours prior to and 72 hours post-immunization (for the immunized cohort) or at the same post-natal age (for controls) was recorded. RESULTS: Thirty-four infants who received DTP-IPV-Hib with whole cell pertussis vaccine, 90 infants who received DTP-IPV-Hib with acellular pertussis vaccine, and 124 control infants were entered in the study. Fifty-six immunized infants (45.1%) and 36 control infants (29.0%) had a resurgence of or increased ABD in the 72 hours post-immunization in the immunized infants and at the same post-natal age in the controls with an adjusted odds ratio for immunized infants of 2.41 (95% CI 1.29,4.51) as compared to control infants. The incidence of an increase in adverse cardiorespiratory events post-immunization was the same in infants receiving whole cell or acellular pertussis vaccine (44.1% versus 45.6%). Eighteen immunized infants (14.5%) and 51 control infants (41.1%) had a reduction in ABD in the 72 hours post- immunization or at the equivalent postnatal age in controls for an odds ratio of 0.175 (95%CI 0.08, 0.39). The need for therapy of ABD in the immunized infants was not statistically different from the control infants. Lower weight at the time of immunization was a risk factor for a resurgence of or increased ABD post-immunization. Birth weight, gestational age, postnatal age or sex were not risk factors. CONCLUSION: There is an increase in adverse cardiorespiratory events following the first dose of DTP-IPV-Hib in preterm infants. Lower current weight was identified as a risk factor, with the risk being equivalent for whole cell versus acellular pertussis vaccine. Although most of these events are of limited clinical significance, cardiorespiratory monitoring of infants who are sufficiently preterm that they are receiving their first immunization prior to hospital discharge should be considered for 72 hours post-immunization.
Acta Paediatr. 2001 Aug;90(8):916-20.
Adverse events following vaccination in premature infants.
Sen S, Cloete Y, Hassan K, Buss P.
Department of Paediatrics and Neonatology, Royal Gwent Hospital, Newport, UK.
Abstract
The aims of this study were to study the frequency, severity and types of adverse reactions following DPT/Hib (diphtheria and tetanus toxoids and pertussis/Haemophilus influenzae type B conjugate) immunization in very preterm infants and to identify possible risk factors. Case notes of 45 preterm babies vaccinated in the neonatal intensive care unit between January 1993 and December 1998 were studied retrospectively. Birthweight, gestational age, duration of ventilation, oxygen dependency, timing of vaccination, weight, corrected gestation at vaccination and apparent adverse effects were noted. Apparent adverse events were noted in 17 of 45 (37.8%) babies: 9 (20%) had major events, i.e. apnoea, bradycardia or desaturations, and 8 (17.8%) had minor events, i.e. increased oxygen requirements, temperature instability, poor handling and feed intolerance. Babies with major events were significantly younger (p < 0.05), had a lower postmenstrual age (p < 0.05) and weighed less (p < 0.05) at the time of vaccination compared with babies without major events. No differences in the mean birthweight, gestational age, duration of ventilation or oxygen dependency were found between the two groups. Age at vaccination of 70 days or less was significantly associated with increased risk (p < 0.01). Of 27 babies vaccinated at 70 days or less, 9 (33.3%) developed major events compared with none when vaccinated over 70 d. CONCLUSION: Vaccine-related cardiorespiratory events are relatively common in preterm babies. Problems were much more common if vaccine is administered at or before 70 d. These babies should therefore be monitored postvaccination. Further prospective studies are needed to clarify whether delaying vaccination offers protection against these adverse events.
J Pediatr. 1997 May;130(5):746-51.
Apnea after immunization of preterm infants.
Sánchez PJ, Laptook AR, Fisher L, Sumner J, Risser RC, Perlman JM.
Department of Pediatrics, University of Texas Southwestern Medical Center at Dallas, USA.
Abstract
OBJECTIVE: To determine the frequency of adverse reactions, particularly the occurrence of apnea, among preterm infants after immunization with diphtheria and tetanus toxoids and whole cell pertussis vaccine adsorbed (DTP) and Haemophilus influenzae type b conjugate (HibC) vaccine in the neonatal intensive care unit. STUDY DESIGN: After the occurrence of apnea in two preterm infants following immunization with DTP and HibC, a prospective surveillance of 97 preterm infants younger than 37 weeks of gestation who were immunized with DTP (94 also received HibC at the same time) in the neonatal intensive care unit was performed to assess the frequency of adverse reactions and in particular, the occurrence of apnea. For each infant, data were recorded for a 3-day period before and after receipt of the immunization. RESULTS: The majority of preterm infants tolerated immunizations with DTP and HibC without ill effects. However, 12 (12%) infants experienced a recurrence of apnea, and 11 (11%) had at least a 50% increase in the number of apneic and bradycardic episodes in the 72 hours after immunization. This occurred primarily among smaller preterm infants who were immunized at a lower weight (p = 0.01), had experienced more severe apnea of prematurity (p = 0.01), and had chronic lung disease (p = 0.03). CONCLUSION: The temporal association observed between immunization of preterm infants and a transient increase or recurrence of apnea after vaccination merits further study. Cardiorespiratory monitoring of these infants after immunization may be advisable.
http://www.ncbi.nlm.nih.gov/pubmed/9152284 ,aand links to the
Posted by: ml | June 08, 2010 at 09:25 PM
Why these researchers even care what we are feeding or not feeding our children is beyond me. It's actually none of their damn business what parents feed their children. Many of us have found behavioral improvement, reduction in gut pain, reduction in seizures, and reduction in general misery by feeding our children what should be a regular healthy diet minus a few things like wheat, corn, soy and dairy which people really haven't been eating for all that long anyway. If they don't believe there is any value to it then stop spending money on foolishly designed studies set up to prove it doesn't work. As asd parents we know how are children react to food and we will feed them accordingly. There are so many avenues to research in Autism (besides godforsaken genes). Is there really any need or room on the shelf for yet another 'the diet doesn't work study'? How many close-minded researchers need to say it? Like the fact that the Autism numbers continue to soar, like the fact kids react badly to vaccines frequently and descend into Autism, our kid's improvement speaks for itself. Our kids are the data and they are everywhere. And yes, having gone from 4 explosive 'poopnami's' a day down to one narly poop - in the potty no less, that kind of improvement is worth every hour spent craning to read the ingredients in the Whole Foods aisle.
Posted by: Alison MacNeil | June 08, 2010 at 08:03 PM
AnaB: I posted a comment regarding the studies you mentioned and the problems with the cohort excluding pretty much everyone except healthy children. I pretty much got lambasted. I haven't bothered to post a counter reply: http://leftbrainrightbrain.co.uk/2010/05/new-study-many-vaccines-at-once-ok-for-kids/#comment-87283
If you look at the cohort used for these 2 studies, they were "able to enroll only 30% of the subjects included for recruitment". Also 70% of the children were fully vaccinated. Also some of the remaining 30% may have received all their vaccinations as well just not early enough. So the study compares vaccinated children with vaccinated children and excludes all children that might have been damaged. Not to mention this gem in the original study:
"Dr. Thompson reports being a former employee of Merck; Dr. Marcy, receiving consulting fees from Merck, Sanofi Pasteur, GlaxoSmithKline, and MedImmune; Dr. Jackson, receiving grant support from Wyeth, Sanofi Pasteur, GlaxoSmithKline, and Novartis, lecture fees from Sanofi Pasteur, and consulting fees from Wyeth and Abbott and serving as a consultant to the FDA Vaccines and Related Biological Products Advisory Committee; Dr. Lieu, serving as a consultant to the CDC Advisory Committee on Immunization Practices; Dr. Black, receiving consulting fees from MedImmune, GlaxoSmithKline, Novartis, and Merck and grant support from MedImmune, GlaxoSmithKline, Aventis, Merck, and Novartis; and Dr. Davis receiving consulting fees from Merck and grant support from Merck and GlaxoSmithKline. No other potential conflict of interest relevant to this article was reported."
Their studies study nothing and show nothing.
Posted by: Trevor de Koekkoek | June 08, 2010 at 08:03 PM
I know the crazy witch hunt surrounding dietary interventions is beyond bizarre!
When was the last time Hyman has been to a public urban school? My sister is a teacher in Spanish Harlem and obesity, asthma and diabetes are now rampant among CHILDREN. Fresh, organic food is difficult to find and afford in these areas so the kids end up eating a high fat diet w/out many fresh fruits or vegetables. As a result their medical conditions only worsen!
I wish half of American kids could eat as well as Christian does! If only we could replace the ubitquitous fast food chains w/ subsidized farmers markets.
"Over nutrition"? That reminds of the time the actor playing George Bush on SNL said he was planning his "strartegery." What does "over nutrition even mean? Too much organic food, not enough artificial flavors or dyes?
What concerns me the most is that these terrible studies study undermine the very real and prevalent GI problems plaguing so many kids
Posted by: Katie Wright | June 08, 2010 at 07:25 PM
Thank you, Katie, for expending the time, money and emotions to attend IMFAR. And thank you for becoming comfortable with the discomfort of making researchers publicly accountable.
I read this statement with mouth agog: "Hyman’s GI study also did not eliminate sugar, processed foods, artificial colorings, ingredients, corn or soy." Good heavens... That's as bizarrely illogical as attempting weight loss without eliminating mounds of cookies, candy, soda, nachos and fries.
There's bound to be some meathead who'll read about Katie's son and say, "Well, he still has 4 loose BMs a day." Which reveals that some people can read words but not understand the reality conveyed. Or feel the empathy that's obvious to those who've lived it, or creates at least a niggling discomfort in others. Six fewer daily diarrhea explosions is something a person notices... and does not miss.
It's long been common knowledge that for some autism families, if their child has a tiny GF/CF infraction it causes dramatic physical and mental setbacks. Some people might refer to the willful or ignorant exposure of sensitive kids to GF/CF foods as child endangerment. That Dr. Hyman is oblivious to this common phenomenon in the autism world is beyond my ability to understand.
Posted by: nhokkanen | June 08, 2010 at 06:48 PM
Thanks for paying the money and asking the questions, Katie! I would have gone a little beserk myself.
Posted by: Jarod's family | June 08, 2010 at 06:06 PM
GFCFSF has changed the 3 little people in my life so much it brings tears to my eyes. Thank God for the internet and all of you who post about this diet and keep hope alive. You reached us in 2008. We have been at it for 2 years and I have happy children who are thriving. These studies make the researcher look so ridiculous to me. Of coarse diet makes a difference-duh? That just seems like common sense especially if you read labels and notice all of the junk in food. She is making herself look like a fool for pete's sake!! Yes, shoot me for wanting my kids to be healthy and feel good. The buck stops here when it comes to eating the "american" way. Yuck! Wake up Hyman!!
Posted by: Trace | June 08, 2010 at 05:20 PM
Thank you Maria Lujan! More avenues to explore. My son's neuro just put him on Prednisone for Temporal Lobe Seizures and 5 days in and we had completely normal bowel function for the first time in 5 years!!! The developmental gains we've seen in this 8 year old over the last 10 days are nothing short of a miracle. 1 year ago he was severely autistic, agressive, and in a diaper and today his ABA therapist told me he is not even like working w/someone w/autism, but more like LD! Granted, one cannot stay on Pred forever so I am exploring every avenue to eliminate his issues safely.
Posted by: AnaB | June 08, 2010 at 05:15 PM
I wish that dim doctor would have been here to see the gigantic, 10-days-in-the-making, tantrum-inducing, sob-wrought, toxic-smelling, physically and emotionally-draining, toilet-clogging, plumber-enriching, poops that were part of our lives before we discovered food allergies and the GF/CF diet. That was back when grocery shopping was easy, but the rest of life was hard. Now it's the other way around. I wouldn't trade back. Nobody in their right mind would. And it breaks my heart that somewhere out there, parents and toddlers are going through those late-night, tear-stained, terror sessions because people like the doctor seem to have a vested interest in obscuring scientific truths. Fie on the lot of them!
Posted by: Garbo | June 08, 2010 at 01:56 PM
About the secretin studies- other part of the scientific topics in autism completely ill- studied by mainstreamed- I do think that there was several aspects to consider. One of them was that formerly, secretin was considered as an "autism treatment", perhaps it should have been better to consider it the treatment of secretin defficiency or abnormal management in a subgroup of autistic children. BUT the problem is that the mainstreamed research is "reactive". That is, because the consensus is that it is genetic, the studies are designed to test - supposedly- the same theories that are presented by - sometimes- anecdotic evidence. But you do not see an attempt to get an up to date knowledge considering more carefully constructed hypothesis. Therefore you have the test for "secretin as autism treatment", "GFCFSF diet as autism treatment",or "MMR /thimerosal/whatever as the CAUSE". BUT there is no attempt many times to produce further knowledge but to discredit aspects.
In Secretin, I have always wondered about the children enrolled in the studies done. How many of them had secretin problems? How many of them could have benefit from secretin? Without this basic clinical study and knowledge the kids enrolled not necessarily were the kids that could have been positively affected by secretin and therefore the whole group of studies is useless.
BTW, recent research on the topic I do think that make necessary a second look on the issue of secretin, you know
Neurogastroenterol Motil. 2010 Mar 4. [Epub ahead of print]
Combined administration of secretin and oxytocin inhibits chronic colitis and associated activation of forebrain neurons.
Welch MG, Anwar M, Chang CY, Gross KJ, Ruggiero DA, Tamir H, Gershon MD.
Department of Psychiatry, Columbia University College of Physicians and Surgeons, New York, NY, USA.
Abstract
Abstract Background The pathogenesis of inflammatory bowel disease is unknown; however, the disorder is aggravated by psychological stress and is itself psychologically stressful. Chronic intestinal inflammation, moreover, has been reported to activate forebrain neurons. We tested the hypotheses that the chronically inflamed bowel signals to the brain through the vagi and that administration of a combination of secretin (S) and oxytocin (OT) inhibits this signaling. Methods Three daily enemas containing 2,4,6-trinitrobenzene sulfonic acid (TNBS), which were given to rats produced chronic colitis and ongoing activation of Fos in brain neurons. Key Results Fos was induced in neurons in the paraventricular nucleus of the hypothalamus, basolateral amygdala, central amygdala, and piriform cortex. Subdiaphragmatic vagotomy failed to inhibit this activation of Fos, suggesting that colitis activates forebrain neurons independently of the vagi. When administered intravenously, but not when given intracerebroventricularly, in doses that were individually ineffective, combined S/OT prevented colitis-associated activation of central neurons. Strikingly, S/OT decreased inflammatory infiltrates into the colon and colonic expression of tumor necrosis factor-alpha and interferon-gamma. Conclusions & Inferences These observations suggest that chronic colonic inflammation is ameliorated by the systemic administration of S/OT, which probably explains the parallel ability of systemic S/OT to inhibit the colitis-associated activation of forebrain neurons. It is possible that S and OT, which are endogenous to the colon, might normally combine to restrict the severity of colonic inflammatory responses and that advantage might be taken of this system to develop novel means of treating inflammation-associated intestinal disorders.
Endocrinology. 2010 Jun;151(6):2681-8. Epub 2010 Mar 23.
Circulating secretin activates supraoptic nucleus oxytocin and vasopressin neurons via noradrenergic pathways in the rat.
Velmurugan S, Brunton PJ, Leng G, Russell JA.
Centre for Integrative Physiology, University of Edinburgh, Hugh Robson Building, George Square, Edinburgh EH8 9XD, United Kingdom.
Abstract
Secretin is a 27-amino acid brain-gut peptide from duodenal S-cells. We tested the effects of systemic administration of secretin to simulate its postprandial release on neuroendocrine neurons of the supraoptic nucleus (SON) in urethane-anesthetized female rats. Secretin dose-dependently increased the firing rate of oxytocin neurons, more potently than cholecystokinin, and dose-dependently increased plasma oxytocin concentration. The effect of secretin on SON vasopressin neurons was also predominantly excitatory, in contrast to the inhibitory actions of cholecystokinin. To explore the involvement of noradrenergic inputs in secretin-induced excitation, benoxathian, an alpha1-adrenoceptor antagonist, was infused intracerebroventricularly. Benoxathian intracerebroventricular infusion blocked the excitation by secretin of both oxytocin and vasopressin neurons. To test the role of local noradrenaline release in the SON, benoxathian was microdialyzed onto the SON. The basal firing rate of oxytocin neurons was slightly reduced and the secretin-induced excitation was attenuated during benoxathian microdialysis. Hence, noradrenergic pathways mediate the excitation by systemic secretin of oxytocin neurons via alpha1-adrenoceptors in the SON. As both systemic secretin and oxytocin are involved in regulating gastrointestinal functions and natriuresis, systemically released secretin might act partly through oxytocin.
Posted by: María Luján | June 08, 2010 at 01:33 PM
Yeah....I'm endangering my son by reading food labels, removing casein and dairy and buying organic products where possible.
Here's the problem...we are endangering the livelihood of McDonalds, Burger King, Pizza Hut and all the other fast food places. We are questioning the safety of food additives and dyes, and as we know, we are not suppose to question these things!
Just like vaccines, we are just suppose to accept that the government knows best, and the food industry would NEVER add anything unsafe into our food supply....
Thanks, but I will keep on "endangering" my son with all this natural stuff!
Posted by: Judith | June 08, 2010 at 01:25 PM
Every time I read about the latest NIH funded autism research,
http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/nih-initiatives/staart/index.shtml,
I marvel at the efforts being made to continue the myth that autism an interesting anomaly that we have all the time in the world to study.
There is never any urgency about any of this research. No one calls for answers in order to end of the suffering of hundreds of thousands of children.
Poorly designed studies like the one conducted by Susan Hyman are proof that no one wants to find out anything about autism.
Here is a recent story from ABC 6 in Philadelphia:
Autism study looks for answers Thursday, May 13, 2010
http://abclocal.go.com/wpvi/story?section=news/health&id=7438889
The news reporter starts this story from ABC6 by saying "Studies have proven that vaccines are not to blame, so what is causing one out of 150 children to be on the autism spectrum."
We are told,
"The EARLI study, or Early Autism Risk Longitudinal Investigation, hopes to find out. It is a large, 10 year study with several testing sites, including one at Drexel University. ...The study follows women who are 20 weeks pregnant or less, who already have one autistic child. They'll take real time surveys about everything from diet to home environment; home visits will be made and biological tests taken, hoping to narrow the possible causes, both environmental and genetic.
" 'I think we're going to be able to make correlations that have not been able to be made before...' "
Whenever I read about a 10 year or 21 year study on autism, my jaw drops. What kind of insane mindset can come up with this kind of research and how can we possibly wait a decade or two to find out answers about autism?
This report from ABC 6 in Philadelphia makes it clear:
VACCINES WILL NEVER BE CONSIDERED AS A CAUSE FOR AUTISM.
AUTISM IS NOTHING REALLY BAD BY SHOWING ONLY A GIRL WITH ASPERGER'S WHO GETS STRAIGHT A's.
THE NUMBERS DON'T MATTER AS WE'RE TOLD THAT ONE IN 150 CHILDREN HAS AUTISM.
GENES WILL CONTINUE TO BE BLAMED.
This lame reporting will only get worse. I'm convinced that no one will do anything to address address. We're so paralyzed by this epidemic and so devoted to proving that it can't be vaccines that no honest inquiry will be made by any federal official or nationally-funded project. So what happens in the coming years as autism spreads across the population affecting adults as well as children? Will we never have any answers on the cause of autism or treatment of autism? How can so much money result in so much ignorance?
Anne Dachel Media
Posted by: Anne McElroy Dachel | June 08, 2010 at 11:45 AM
Just what is considered "over nutrition"? Is that the same as "too healthy"?
There are only a couple of other kids on a GF/CF diet in my son's ASD classroom. The other parents say..."i really don't think it's working or helps" well I might tell them that it's probably because of all of that supposedly GF/CF ABA reward candy -the dye filled, sugar filled kind, might be the culprit of "why" it's not working. My son would be off the wall if he ate even the tiniest amount food dyes. And these kids are getting it all day long for every right answer. I've gone in to school and observed children eat snack and then literally bounce off the walls and throw their bodies on the floor...
I always have conversations with some of these parents but they are not prepared or motivated to get real with the food or the GI dysfunction. And they've been told and convinced by mainstream media/medicine that I'm peddling silliness. Sometimes years later I get a call begging me for help because their child was diagnosed with Colitis or IBS or IBD or Crohn's. Unfortunately this is never a surprise to hear.
Posted by: Allison | June 08, 2010 at 10:44 AM
Katie - yet again a fantastic article - thank you. You do not know how thankful I am for you and all of your advocacy.
Sometimes I read AofA and think "what about my son?" He's not autistic, not even HFA or Asperger's (which is what I suspected for awhile which lead me to this whole arena). For this I am grateful. BUT THE SAME THINGS THAT WORK FOR MANY PARENTS HERE WORK FOR MY CHILD!! WHAT DOES THAT MEAN?
My son does have a severe visual processing issue (now reading way above grade level praise God) and many, many food sensitivities. Prior to going GFCF he was miserable. And he only ate 4 things: chicken nuggets, mac & cheese, pizza and pancakes. Despite all our attempts at other foods - nothing. NO DOCTOR COULD EVER TELL ME HOW TO HANDLE THIS! He had eczema so bad on his legs that it got infected with staph. He had strep 4-5 times in kinder. Again, nothing from mainstream peds except antibiotics and a pat on the head ("he'll grow out of this mom").
Within 2 days of going gluten free I saw him eat broccoli. BROCCOLI!! He started putting on weight and growing again. We stopped visiting the ped on a regular basis - so infrequently that our ped commented "wow, haven't seen you guys in a LONG time - he is looking great!" NO KIDDING AND NO THANKS TO YOU DOC!
Other moms actually comment to me how "healthy" my son eats and how nice it must be to not have a picky eater (eyes rolling on my end).
I just don't understand how people can criticize a diet which is SOOO much healthier than what your average kid eats. It makes me down right angry (when I'm not laughing). What is going on in our society and what are we doing to an entire generation of kids?
Sorry to rant - thanks again Katie. You are awesome, literally.
Posted by: Parent | June 08, 2010 at 10:15 AM
Who do we write to get Susan Hymans funding gone?
My boy goes mute within 20 minutes of ingesting casein.
DPP-IV enzyme is awesome!
MAKE AUTISM STOP
Posted by: MAKE AUTISM STOP | June 08, 2010 at 09:45 AM
Oh, I know Katie - they have been excluding pertinent groups from Autism research for a long time. Just consider the following study: "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" New England Journal of Medicine, Thompson WW et al. (September 27, 2007)
---
"The sample comprised children who were least likely to exhibit neuropsychological impairments. Specifically, children with congenital problems, those from multiple births, those of low birth weight, and those not living with their biological mother were excluded" (source: fourteenstudies.org). How do you do a Thimerosal study by excluding those most at risk for a neurodevelopmental disorder? & here is the kicker - the data set from that study was used on this more recent study that implies that the current vaccine schedule is safe for all kids!
Then there was the matter of Secretin. Parents were reporting dramatic improvements on the PORCINE version. So what do they do? They design a study around the sythetic version of Secretin, yet not one parent reported any benefit on the synthetic. So naturally the study shows no benefit and Secretin gets forgotten about. Why not use the form of Secretin that was giving the benefits. A no brainer!
There seems to be a formula, whether through design or blatant tunnel vision ignorance: Get a few researchers with an agenda to schew studies in a certain direction then the medical establishment stops asking questions. Case closed. And parents are just pathetic souls who "just want something to blame" or "are abusing their kids with unnecessary diets".
Posted by: AnaB | June 08, 2010 at 09:34 AM
GO GET 'EM!! Thank you for your time and money at that conference.
Oh yea - my son's diet is nowhere near perfect BUT you should have seen it pre-GFCFSF - orange peanut butter crackers, processed eggo pancakes, baby biter biscuits, ice cream - anything to get a food into him. God help anyone who says my elimination diet is dangerous with the organic meats, homemade breads, pancakes and cookies, some...gasp...fruit and one vegetable. How could I be so cruel? Oh by the way - he can now talk, move his bowels, play and sleep. But he probably would have gotten here without the intervention - he's just 'outgrowing' his diagnosis. NOT.
Posted by: Cathy R. | June 08, 2010 at 08:22 AM