Autistic boy dies during chelation therapy

From Volume 3 Number 12

PORTERSVILLE, Butler County, Pennsylvania, USA : A five-year-old autistic boy died on August 23 in a Butler County doctor's office while undergoing an increasingly popular - though controversial - medical treatment touted by some as a cure for autism.

            Abubakar Tariq Nadama died while receiving chelation (pronounced key-lation) therapy, an intravenous injection of a synthetic amino acid that latches on to heavy metals and is then passed in the urine.

            State police at Butler are investigating Nadama''s death, which occurred at about 10.50 am in the office of Dr Roy Eugene Kerry in Portersville.

            The authorities said that Dr Kerry's office had reported that the child was receiving an IV treatment for lead poisoning when he went into cardiac arrest.

            The boy was being treated with EDTA, or ethylene diamine tetraacetic acid, which has been approved by the Food and Drug Administration for use only after blood tests confirm acute heavy-metal poisoning.

            Exposure to heavy metals, especially mercury, has been linked by some researchers as a contributing cause to autism. Removing those metals, they believe, can improve a child's condition. The theory is a matter of dispute among scientists and within the autism community.

            A family friend said the boy and his mother, Marwa, who are from England, moved here in the spring, specifically to receive chelation therapy, and were living in Monroeville.

            In the autism community, the use of chelation as a way to detoxify environmental contaminants in children has exploded since 2000 as more and more families have reported miraculous improvements and even cures. But sceptics in the community say they fear the procedure is, at best, risky and possibly lethal.

            "It was just a matter of time before something like this would happen," said Howard Carpenter, executive director of the Advisory Board on Autism-Related Disorders. "Parents of children with autism are desperate. Some are willing to try anything."

            " I can't sit there and endorse it as a viable treatment. It's not something published in peer review journals and studies," said Dr Gary Swanson, a child psychiatrist at Allegheny General Hospital who works with autism patients. "It's probably a quack kind of medicine."

            If the child's death is tied to chelation therapy, it would be the first associated with the procedure since the 1950s, said Dr Ralph Miranda of Greensburg. Dr Miranda is the former president of the American College for Advancement in Medicine, a group that sets clinical practice and education standards for chelation and other, similar therapies.

            Chelation can be administered through pills, skin creams or other transdermal methods, nasal sprays, sauna baths and intravenously. Dr Miranda said it was unusual to give a young child IV treatments unless he had an extremely high level of heavy metals.

            He said that although EDTA was a "very safe drug," he usually administered an oral form of chelation drugs to form of chelation drugs to children to remove toxins because pills were safer. It did, however, take longer to remove the toxins with the pills.

            "There are people out there suggesting using the IV to get faster results. I'm not," Dr Miranda said.

            Marwa Nadama said on August 24 that she did not want to comment except to say that she was not blaming chelation for her son's death - at least not at this point.

            "Let's wait until we have the results of the autopsy," she said.

            An autopsy conducted on the child's body on August 24 by the Allegheny County coroner's office was inconclusive. Results on the cause and manner of death are pending additional testing which could take up to five months to complete, the authorities said.

            Dr Kerry, who is a board-certified physician and surgeon, advertises himself as an ear, nose and throat specialist, dealing with allergies and environmental medicine. He operates out of offices in Greenville and Portersville under the name Advanced Integrative Medicine Center Inc. Dr Kerry did not return calls to his offices on August 24.

            Doctors affiliated with the National Institute of Mental Health and the American Academy of Pediatrics do not endorse the use of chelation therapy to remove heavy metals for autism. Such drugs used in the process can cause liver and kidney damage and other problems.

            Cindy Waelterman, director of the Pittsburgh-based national advocacy group, AutismLink, issued a statement to members on August 24 warning that caution needs to be used as parents seek help for their autistic children.

            "Please, before you try any new therapies, we urge you to research the physician, the methods and the safety. Some of these therapies are quite dangerous. We're not telling you what to do, we're just urging you to use caution. We all do what we think is best for our children, and sometimes we are desperate. While we've heard stories of chelation success, it is definitely a dangerous process," Waelterman wrote.

            She said parents on her group's online forum have referred to Dr Kerry as a known practitioner of chelation therapy.

            "There are those in the alternative medical field who feel that mercury and other toxic elements do contribute to autistic disorder, and that their removal would be a pathway to reducing autism," said Dr Jonathan Collin, a practitioner of alternative medicine in Washington State.

            "Chelation for autism is a fraud," said Stephen Barrett, a retired Lehigh County psychiatrist and founder of the Quackwatch Web site. "Many doctors who treat children for autism claim they are suffering from mercury or lead toxicity. There is no sufficient evidence that autism is caused by mercury or lead toxicity."

            Dr Kerry was one of the contributors to a study and subsequent article entitled "Beneficial Effects of Enzyme-Based Therapy for Autism Spectrum Disorders," which appeared in the Townsend Letter for Doctors & Patients magazine.

            "Parents should be clear that, when considering any experimental medical treatment for a child, we are placing that child at risk," the study states.

            Dr Collin, who is the editor and publisher of the magazine, admits chelation therapy  "is a controversial topic. It is something that is accepted in the alternative medicine camp but admittedly not by the American Medical Association or the Pediatric Association." Barrett, who lives in Allentown, Lehigh County, is blunt in his criticism of chelation therapy.

            "Basically, chelation has nothing to offer," he said. "The treatment is worthless and has some potential danger. Here is a case that demonstrates that. I'll bet you that every parent with an autistic child is going to hear about this case. This is a very serious matter. I think it is going to have a tremendous impact on the autism community."

            Both Barrett and Dr Collin said this was the first time they had heard of an autistic child dying after undergoing chelation therapy.

            Barrett, who said he suspected there had been other cases that were never reported, also questioned the tests that showed a preponderance of lead and mercury in the bloodstream of a child.

            "There is a little bit of mercury in fish and little bits of heavy metal here and there (in the body) that is of no consequence," Barrett said. "It's very unlikely that the child had lead poisoning ... unless the child was eating paint. Generally, the tests that are administered are bogus."

            Dr Collin said he used chelation therapy on adults. He said he did not treat children.

            "Chelation, unfortunately, is a wide range of treatments, not just a single therapy. The effectiveness of any one therapy can be widely varied, and also the safety of any one therapy can be widely varied," Dr Collin said. "It's quite possible that what I find to be relatively safe in adults would be quite a different process in a five-year-old.

            "EDTA has been used in treating adults for 50 years. Maybe the chelation substance at hand was not just as well studied for paediatric use and, therefore, had the risk of creating a problem for a five-year-old."

            News of the death swept across the autism community on August 24, alarming proponents and foes of the treatment.

            "It's just terrible. My heart is just dying for the family," said J.B. Handley of San Francisco, who helped found Generation Rescue, an international advocacy programme for the use of biomedical treatments that include chelation therapy to help autistic children. He claims that his son, Jamison, now three, has dramatically improved since undergoing chelation therapy to remove mercury, the metal most associated with autism because of its presence in some childhood vaccines. He and his wife launched their international group in May.

            Handley said that, in 2000, perhaps a dozen autistic children had been treated with chelation therapy. This year, it was more than 10,000.

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