Aspies For Freedom

Wednesday, August 24, 2005
By Karen Kane and Virginia Linn, Pittsburgh Post-Gazette

A 5-year-old Monroeville boy died this week during a medical treatment that's being touted by some as a cure for autism.

The autistic boy died while receiving chelation -- an intravenous injection of a synthetic amino acid known as EDTA, for ethylene diamine tetraacetic acid. The Food and Drug Administration has approved the practice only to treat heavy metal (such as lead) poisoning. The treatment is becoming increasingly popular, though still controversial, for autism.

Police are investigating the boy's death, which occurred Tuesday morning in the office of Dr. Roy Kerry in Portersville. Kerry did not return calls today.

An autopsy conducted today was inconclusive. Results on the cause and manner of death are pending additional testing that could take up to five months to complete, authorities said.

More details in tomorrow's Pittsburgh Post-Gazette.

Thursday, August 25, 2005
By Karen Kane and Virginia Linn, Pittsburgh Post-Gazette

A 5-year-old autistic boy died Tuesday in a Butler County doctor's office while undergoing an increasingly popular though controversial medical treatment touted by some as a cure for the lifelong neurological and developmental disorder.

Abubakar Tariq Nadama died while receiving chelation therapy, an intravenous injection of a synthetic amino acid that latches onto heavy metals and is then passed in the urine.

State police at Butler are investigating Nadama's death, which occurred at about 10:50 a.m. Tuesday in the office of Dr. Roy Eugene Kerry in Portersville.

Authorities said Kerry's office 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 skeptics 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," he said.

"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. 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. Miranda said it is unusual to give a young child IV treatments unless he has an extremely high level of heavy metals.

He said although EDTA is a "very safe drug" he usually administers an oral form of chelation drugs to children to remove toxins because pills are safer. It does, 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," he said.

Marwa Nadama said yesterday she did not want to comment except to say that she is 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 yesterday on the child's body 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, authorities said.

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. Kerry did not return calls to his offices yesterday.

Doctors affiliated with the National Institutes of Mental Health and 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 Waeltermann, director of the Pittsburgh-based national advocacy group AutismLink, issued a statement to members yesterday 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 Kerry as a known practitioner of chelation therapy.

News of the death soared across the autism community yesterday, 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 program for the use of biomedical treatments that include chelation therapy to help autistic children.

He claims his son Jamison, now 3, 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.

He said that, in 2000, perhaps a dozen autistic children were treated with chelation therapy. This year, it's more than 10,000.

This situation is an outrage and needs international reaction. A statement needs to drawn in reaction and signed by as many of us as possible. No time to worry about what list or group we are with. The quacks will kill any of us.

          There is a DAN! conference in Toronto that needs to be picketed.
  September 16th, I believe.

                                      Jerry Newport
                                      Tucson, AZ

The name of the doctor who provided treatment to this child is Dr. Roy E. Kerry

EDTA is a strong chelator of calcium and magnesium ions, which is why dangerous hypocalcemia is a risk when using EDTA intravenously. Similarly, EDTA chelation therapy can also lead to kidney failure, anticoagulation resulting in bleeding, vasculitis, autoimmune reactions, and depletion of serum zinc ions (which EDTA binds more strongly than calcium or magnesium), leading to compromise of the immune system. Anyone administering chelation therapy in an office not connected to a hospital needs to be prepared to deal with immediately life-threatening complications like cardiac arrhythmias right then and there, because there won't be time to get the patient to a hospital in time to save his life if such complications ensue. At minimum, this would require a fully stocked crash cart and personnel well trained in ACLS and (if treating children) PALS. If Dr. Kerry did not have these resources available, plus cardiac monitoring equipment, it would have been quite reckless of him to be administering intravenous chelation therapy in his office.

Hi

One of the things that lacks most for autism is support for parents(and they are seldom the social elite),

HA
that is a joke. NT parents usually run the show even when they have advocates for high function autistics in their name. They have token aspies in their ranks but none in a position of leadership. They downtalk us especially to politicla contacts. if we dont have the right views they "say unpridectable" just to smear us . well me in particular

I cry no tears for thee

What about a sharing of autistic typical perspectives with NT's    that will help improve often strained communications between the autistic child and their parents :cry: .

In the mean time setting up a kind of lookup list of things that parents can do straight away that can help them get through to their kids in well known situations that are tough to handle and vice versa.