Autism
Secretin may not be effective against childhood autism
The pig hormone has been found to be no better than a placebo in several studies.
Health officials Wednesday urged parents of autistic children not to give them the hormone secretin after four separate studies found that the much-touted miracle cure was no better than saltwater at fighting symptoms of the brain disorder.
The largest of the double-blind studies, which measured the effects of secretin and a placebo in 56 children between the ages of 3 and 14, was published Wednesday in the New England Journal of Medicine. Secretin and saline solution both improved the behavior of the autistic children.
“These findings strongly suggest that secretin should not be recommended to treat autism until the results of our other ongoing studies are known,” said Dr. Duane Alexander, director of the National Institute of Child Health and Human Development.
Autism is a devastating brain disease that usually has onset in infancy or early childhood, characterized by absent social skills and abnormal intelligence. It affects as many as 600,000 Americans and appears to be increasing, for reasons unknown.
In addition to their impenetrable personalities many autistic children have sleep problems and diarrhea. And gastrointestinal problems were what led the autistic community to secretin.
In April 1996, Victoria Beck brought her 4-year-old son Parker to a Maryland clinic to receive an infusion of secretin, a pig hormone used to test pancreatic function.
Within a few days of the diagnostic test, Parker underwent a miraculous transformation, his mother says. A mute boy with disrupted sleep and erratic bowels, he began talking and sleeping through the night. His diarrhea went away.
Beck, an enterprising New Hampshire housewife, had the perspicacity to videotape the changes in her son’s behavior. She wrote a book about secretin, filed a patent for its use and appeared on “Good Morning America,” “Dateline” and other TV shows. Soon thousands of parents were clamoring for the drug. According to Ed Purich, a pharmacist involved in secretin research, as many as 8,000 autistics have gotten infusions in the last two years.
The day after Beck’s appearance on “Dateline,” phones started ringing at pediatricians’ offices around the country — parents of autistics eager to try anything that would spark communication with their damaged children, who typically live in a foggy world of repetitive actions and strange obsessions, beyond the reach and understanding of their loved ones.
As it happens, the only company that produced pig secretin for the diagnostic market stopped making it, and supplies dried up. Unscrupulous salesmen have charged up to $15,000 per vial for products that are either illegally imported, derived from unfiltered industrial stocks or simply don’t contain secretin at all.
Other parents, including Beck, have started administering secretin transdermally by mixing it with a substance called DMSO, which probably denatures the hormone before it can even be absorbed in the bloodstream. “It’s really a waste of money,” Purich says.
Beck and Bernard Rimland, a maverick autism advocate in San Diego, sold the secretin patent last year for a reported $1 million in cash and stock to Repligen, a Needham, Mass., biotech company whose CEO, Walter Herlihy, has two autistic children. (Beck donated her $750,000 in stock to Rimland’s institute).
In January, meanwhile, the National Institutes of Health put out a request for double-blind studies of secretin. So far, groups in Atlanta, North Carolina and two in Chicago have presented data that has all shown no more benefit from secretin than placebo.
All the studies, however, showed some benefit from both placebo and secretin — cementing the impression that secretin has no particular value other than as placebo.
“Some treatments are identified serendipitously and that was the hope with secretin,” said James Bodfish of the University of North Carolina in Chapel Hill, whose study was published Wednesday in the Journal. “This is disappointing but the good news is that the clinical and research communities were able to quickly answer questions parents had.”
Rimland and Herlihy deny that the Journal article is the last word in secretin. Rimland, who predicted earlier this year that 70 percent of autistics would benefit from secretin, said that study of the hormone is still in its early stages. The told-you-so attitude of many pediatric neurologists, he said, “is not surprising since this is a community that’s negative about any innovation that doesn’t include psychoactive drugs like Prozac and Ritalin.”
Repligen’s stock fell Tuesday amid word of the Journal article (the company also produces a purification device for making antibodies and has an immunosuppressant for leukemia patients in trials).
But Herlihy said he was confident a subset of autistics — perhaps 20 percent — would eventually benefit from secretin.
“That may not sound like much but this is a disease where nothing works. Twenty percent would make me the happiest man on earth.” His children have gotten secretin, Herlihy says, and while “they haven’t been reciting sonnets, they’ve been more social, they’ve reached up to the edge of the group.”
He noted that all the trials reported so far gave only one dose of the hormone, which he said may work best with repeated doses.
Another physician with autistic kids, Phoenix obstetrician Cynthia Schneider, has also completed a controlled double-blind study of secretin. She, too found no statistical difference in the response of placebo and secretin recipients.
Schneider began studying secretin after her 8-year-old son, Derek, thrived on it. She says that individual patients within the study showed remarkable results from the hormone.
One 3-year-old who hadn’t slept more than two hours in a row his entire life began sleeping through the night and taking an afternoon nap, she said. “His mother said, ‘He went from being Tigger to Pooh.’”
She also said autistics with gastrointestinal problems did well in her study — the theory being that these patients have a genetic abnormality, a shortage of natural secretin production, that is linked to both the brain and gastrointestinal problems.
Other researchers, including Bodfish’s group, saw no particular benefit for the subgroup of diarrhetics in their study.
While a single dose of secretin seems to be safe — only a small number of adverse reactions have been reported — scientists are worried that repeated doses could cause autoimmune reactions, particularly when the pig hormone is used.
Arthur Allen writes on health, science and other issues for Salon. He lives in Washington. More Arthur Allen.
Disabled — and handcuffed at school
Underfunded schools are facing an influx of students with disabilities -- and using increasingly brutal discipline
(Credit: Alexander Raths via Shutterstock)
There’s a danger looming in schools today that’s putting our nation’s most vulnerable children at risk. Around the country, teachers and administrators are struggling to meet the needs of a growing population of disabled students, and they are entering school environments ill-prepared to educate these children responsibly, thanks to a lack of both adequate training and resources. This lack of preparation for handling students’ special needs is, in turn, sparking a disturbing and dangerous trend: the use of harmful “zero tolerance” policies that end in seclusion, restraint, expulsion and – too often – law enforcement intervention for the disabled children involved.
s.e. smith is a writer and editor whose work has appeared in Bitch, Feministe, Global Comment, the Sun Herald, the Guardian, and other publications. Follow smith on Twitter: @sesmithwrites. More s.e. smith.
Grandin on the autism surge
Temple Grandin tells Salon what the new numbers mean to her, and why increased autism awareness isn't always good
Temple Grandin (Credit: Rosalie Winard) In the last few weeks, new autism figures have created widespread controversy among American parents. In early April, the CDC released its latest, shocking report on the disorder, which showed a massive uptick in the number of diagnoses — according to the numbers, one in 88 children and one in 54 boys are now on the autism spectrum. That’s an astonishing 78 percent increase since 2002. In the weeks since, pundits and doctors have spent a lot of time debating what these changes actually mean: Are they due to increased detection, loosened definitions of autism or are we in the middle of a genuine upsurge in autism among American children? As Dr. Thomas Frieden, the director of the CDC, told reporters, this change may “entirely the result of better detection. We don’t know whether or not that is the case.”
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Thomas Rogers is Salon's Arts Editor. More Thomas Rogers.
The new autism reality
The recent stats may seem scary. But as a mom who worried in solitude, I know there's hope in not being alone
(Credit: ZouZou via Shutterstock/Salon) The first person I ever heard call my child “autistic” was the story lady in the children’s section of the Duluth Public Library. January 1991.
My young husband and I had moved to the Iron Range for a number of romantic reasons. We thought it was beautiful and in some way more “authentic” than the place we’d been living. We also believed the clean lake air would cure the asthma suffered by our younger son. What we failed to take into account was the 14 percent unemployment and a taconite-weary city with little but service work.
Continue Reading CloseAnn Bauer's novel, "The Forever Marriage," will be published by Overlook Press in June. This article came from her blog, which you can read at www.theforevermarriage.com. More Ann Bauer.
Bachmann: It’s ok to spread lies about vaccines because I never said I’m a doctor
After claiming that the life-saving HPV vaccine causes "mental retardation," the candidate declines to apologize
Republican presidential candidate, Rep. Michele Bachmann, R-Minn., speaks during a rally in Costa Mesa, Calif., Friday, Sept. 16, 2011. (AP Photo/Chris Carlson)(Credit: Chris Carlson) The other day, Michele Bachmann said that the HPV vaccine made someone “mentally retarded,” which is not only untrue but also the sort of remark that leads to parents denying their children vaccines that could save their lives.
When confronted on this, after a few days of both liberals and conservatives decrying her, Bachmann did not really apologize or correct the record. Instead, she said it’s OK for her to say things like that because she never told anyone she’s a doctor. As long as you don’t lie about a doctor, you can claim anything you like about medical matters, on TV, and it’s OK! (I’m not a doctor but I heard that if you make your baby wear a onesie with a “funny” slogan on it your baby will die.)
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Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at apareene@salon.com and follow him on Twitter @pareene More Alex Pareene.
Michele Bachmann moves to the left (on crazy conspiracy theories)
The suddenly flailing 2012 candidate adopts the popular liberal myth that injections are dangerous
In a Thursday, Sept. 8, 2011 photo, Republican presidential candidate Rep. Michele Bachmann, R-Minn., delivers the Republican response to the speech by President Barack Obama to a joint session of Congress at the Capitol in Washington. Starting this weekend, Bachmann plans to campaign almost exclusively in Iowa as she tries to reassert herself in a race that's become a two-candidate contest between Texas Gov. Rick Perry and former Massachusetts Gov. Mitt Romney. (AP Photo/Cliff Owen)(Credit: Cliff Owen) Michele Bachmann said that the HPV vaccine makes babies “retarded.” This is easily the dumbest, most irresponsible and inflammatory comment she’s made in years. It began at Monday’s debate, when she attacked Rick Perry for his now infamous decision to require that girls receive the vaccine. “Little girls who have a negative reaction to this potentially dangerous drug don’t get a mulligan.”
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Alex Pareene writes about politics for Salon and is the author of "The Rude Guide to Mitt." Email him at apareene@salon.com and follow him on Twitter @pareene More Alex Pareene.
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