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Fringe autism treatment could get federal study
2008-07-09
CHICAGO - Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine. Muzi.com News 10073929-0 (muzi.com)The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism -- a theory never proved and rejected by mainstream science. Mercury hasn't been in childhood vaccines since 2001, except for certain flu shots. Muzi.com News 10073929-1 (muzi.com) But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe. Muzi.com News 10073929-2 (muzi.com) "So many moms have said, `It's saved my kids,'" institute director Dr. Thomas Insel said. Muzi.com News 10073929-3 (muzi.com) For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel told The Associated Press. Muzi.com News 10073929-4 (muzi.com) The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood. Any study in children would have to exclude those with high levels of lead or mercury, which would require treatment and preclude using a placebo. Muzi.com News 10073929-5 (muzi.com) One of the drugs used for chelation, DMSA, can cause side effects including rashes and low white blood cell count. And there is evidence chelation may redistribute metals in the body, perhaps even into the central nervous system. Muzi.com News 10073929-6 (muzi.com) "I don't really know why we have to do this in helpless children," said Ellen Silbergeld of Johns Hopkins University's Bloomberg School of Public Health, who was invited to comment on the study to a review board of the national institute. Muzi.com News 10073929-7 (muzi.com) Despite lawsuits and at least one child's death, several thousand autistic children are already believed to be using chelation (pronounced kee-LAY'-shun), their parents not content to wait for a study. Muzi.com News 10073929-8 (muzi.com) Among those parents is Christina Blakey of suburban Chicago, who uses chelation and a variety of other alternative therapies, including sessions in a hyperbaric chamber, on her 8-year-old son, Charlie. Muzi.com News 10073929-9 (muzi.com) Before he started chelation at age 5, Charlie suffered tantrums. When she took him to school, she had to peel him off her body and walk away. But three weeks after he began chelation, his behavior changed, she said. Muzi.com News 10073929-10 (muzi.com) "He lined up with his friends at school. He looked at me and waved and gave me a thumbs-up sign and walked into school," Blakey said. "All the moms who had been watching burst into tears. All of us did." Muzi.com News 10073929-11 (muzi.com) There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine. Muzi.com News 10073929-12 (muzi.com) Autism is a spectrum of disorders that hamper a person's ability to communicate and interact with others. Most doctors believe there is no cure. Muzi.com News 10073929-13 (muzi.com) Conventional treatments are limited to behavioral therapy and a few medications, such as the schizophrenia drug Risperdal, approved to treat irritability. Muzi.com News 10073929-14 (muzi.com) Frustrated parents use more than 300 alternative treatments, most with little or no scientific evidence backing them up, according to the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Md. Muzi.com News 10073929-15 (muzi.com) "With a lot of mothers, if they hear about a treatment, they feel like they need to try it," said project director Dr. Paul Law. "Anything that has a chance of benefiting their child, they're willing to give it a shot." Muzi.com News 10073929-16 (muzi.com) More than 2 percent of the children tracked by the project use chelation. If that figure holds for the general population, it would mean more than 3,000 autistic children are on the treatment at any time in the United States. Muzi.com News 10073929-17 (muzi.com) Chelation drugs can be taken in pill form, by rectal suppository and intravenously. Muzi.com News 10073929-18 (muzi.com) Dr. Susan Swedo, who heads the federal institute's in-house autism research and wants to study chelation, gained notoriety by theorizing that strep throat had caused some cases of obsessive compulsive disorder. The theory was never proved. Muzi.com News 10073929-19 (muzi.com) She proposed recruiting 120 autistic children ages 4 to 10 and giving half DMSA and the other half a dummy pill. The 12-week test would measure before-and-after blood mercury levels and autism symptoms. Muzi.com News 10073929-20 (muzi.com) The study outline says that failing to find a difference between the two groups would counteract "anecdotal reports and widespread belief" that chelation works. Muzi.com News 10073929-21 (muzi.com) But the study was put on hold for safety concerns after an animal study, published last year, linked DMSA to lasting brain problems in rats. It remains under review, Insel told the AP. Muzi.com News 10073929-22 (muzi.com) Insel said he has come to believe after listening to parents that traditional scientific research, building incrementally on animal studies and published papers, wasn't answering questions fast enough. Muzi.com News 10073929-23 (muzi.com) "This is an urgent set of questions," Insel said. "Let's make innovation the centerpiece of this effort as we study autism, its causes and treatments, and think of what we may be missing." Muzi.com News 10073929-24 (muzi.com) Last year, the National Institutes of Health spent less than 5 percent of its $127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved. Muzi.com News 10073929-25 (muzi.com) Others say it would be unethical, even if it proves chelation doesn't work. Muzi.com News 10073929-26 (muzi.com) Federal research agencies must "bring reason to science" without "catering to a public misperception," said Dr. Paul Offit, chief of infectious diseases at the Children's Hospital of Philadelphia and author of an upcoming book on autism research. "Science has been trumped by politics in some ways." Muzi.com News 10073929-27 (muzi.com) Offit is concerned vaccination rates may fall to dangerous levels because some parents believe they cause autism. Muzi.com News 10073929-28 (muzi.com) Dr. Martin Myers, former director of the federal National Vaccine Program Office, said he believes giving chelation to autistic children is unethical -- but says the government can justify the study because so many parents are using chelation without scientific evidence. Muzi.com News 10073929-29 (muzi.com) "It's incumbent on the scientific community to evaluate it," he said. Muzi.com News 10073929-30 (muzi.com) Actress Jenny McCarthy, whose bestseller "Louder Than Words" details her search for treatments for her autistic son, Evan, told thousands of parents at a recent autism conference outside Chicago that she plans to try chelation on him this summer. Muzi.com News 10073929-31 (muzi.com) "A lot of people are scared to chelate ... but it has triggered many recoveries," she said. Muzi.com News 10073929-32 (muzi.com) But those claims are only anecdotal, and there are serious risks. Muzi.com News 10073929-33 (muzi.com) Of the several drugs used in chelation, the only one recommended for intravenous use in children is edetate calcium disodium. Mixups with another drug with a similar name, edetate disodium, have led to three deaths, including one autistic child. Muzi.com News 10073929-34 (muzi.com) A 5-year-old autistic boy went into cardiac arrest and died after he was given IV chelation therapy in 2005. A Pennsylvania doctor is being sued by the boy's parents for allegedly giving the wrong drug and using a risky technique. Muzi.com News 10073929-35 (muzi.com) No deaths have been associated with DMSA, which can cause rashes, low white blood cell count and vomiting. It is also sold as a dietary supplement, which is how some parents of autistic children get it. Muzi.com News 10073929-36 (muzi.com) A Food and Drug Administration spokeswoman said the agency is "is looking into how these products are marketed." Muzi.com News 10073929-37 (muzi.com) ___ Muzi.com News 10073929-38 (muzi.com) On the Net: Muzi.com News 10073929-39 (muzi.com)
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