Desperate parents seek autism's cure

When Dr. Julia McMillan, a professor of pediatrics at Johns Hopkins University School of Medicine, arrived at work yesterday, she had an e-mail from a colleague with the subject line, "This was bound to happen."

The e-mail said a 5-year-old autistic boy, Abubakar Tariq Nadama, had gone into cardiac arrest and died in suburban Pittsburgh on Tuesday after receiving chelation therapy, a treatment that uses drugs to strip toxic heavy metals from the body.

The Butler County coroner's office said yesterday that tests had not yet concluded what killed the boy, who had been receiving his third treatment.

But his death brings to light the desperation of the growing number of parents seeking chelation, based on the theory -- rejected by the American Academy of Pediatrics -- that autism is caused by a mercury-based preservative formerly used in vaccines. Many are seeking to "detoxify" their children with expensive, unproven therapies such as chelation, in which drugs are administered either orally, topically or intravenously.

The parents say they have no choice but to search for answers -- the mainstream medical community offers no precise reason for autism, nor a cure or specific medical treatment, only behavioral therapies. Autism is a developmental disorder that affects a child's ablity to communicate or interact.

"It's truly devastating for families; it's not surprising they would look for some cure," said McMillan, of Johns Hopkins. "I don't fault those families, except when what they're doing is more dangerous. . . . It's a known dangerous treatment."

CHELATION is considered a valid treatment for exposure to lead paint and certain other acute heavy-metal poisonings. But its effect on autism is mostly anecdotal, shared among parents who gather in support groups -- such as Moms For Options to Treat and Heal Autism and Related Syndromes -- which meets in Providence once a month.

"We think our kids were poisoned," said Sherri Crohan, of Lincoln, the president. "The bottom line is: if you get the mercury out, the kids get better."

Matthew and Kristine Rogan, of Cranston, drive their 5-year-old son to an alternative doctor in Rhinebeck, N.Y., every six weeks for a $700 chelation treatment, which isn't covered by insurance.

Some parents have sought to sue vaccine makers. But Kristine Rogan, a teacher in North Providence, says she just wants to help her son. "I want to fix him, and if that happens, I don't care about anything else," she said.

The couple were off to Rhinebeck yesterday, undeterred by the news of the boy in Pittsburgh. Matthew Rogan, a nurse at Rhode Island Hospital, says the couple have weighed the risks and benefits and believe that chelation is the way to rid their son of the mercury that they suspect damaged him.

"In our circle of friends, everyone is doing it," he said. "You go to an autism conference and start talking about mercury, and people look down on you and think you're crazy. But if you read the books, it's a no-brainer."

He says his son hasn't had side effects and seems to be improving, though it's difficult to tell whether it's the chelation, because the couple is trying numerous alternative treatments, including supplements suggested by the Rhinebeck Health Center & the Center for Progressive Medicine. "He's doing better," Matthew Rogan said of his son. "We're not there yet."

"We have a lot of hope for our son," he said.

THE ROGANS, who have also taken their son to California and Chicago for alternative treatments, say they expect that mercury will eventually come out in their son's urine. So far, it has not. Matthew Rogan said he was told that mercury is the last metal to come out during chelation, and that it will take more treatments.

"He just excreted a bunch of lead," he said. "It was off the charts what came out of his body. We're working on lead right now. We have to keep chipping away at that to get down to mercury."

Barbara Coddington, an assistant at Rhinebeck Health Center, said yesterday that the children taking chelation are typically hooked up to an IV and given a drug called EDTA -- ethylene-diamine-tetra-acetic acid. The clinic is a member of Defeat Autism Now, a national network of alternative doctors started in 1995.

Coddington said autistic children come from all over, "from Iraq, from England, from Pakistan. It's been wonderful to watch how some of the kids didn't speak or interact very well when they started coming here, and they do now."

DR. ROBERT BARATZ, an internist and the president of the National Council against Health Fraud, in Peabody, Mass., said parents are being sold false hope. "It's a group of people preying upon the desperate," he said.

Baratz said that even if one accepts the hypothesis that mercury caused autism, there's no evidence that chelation can help. He said that the way organic mercury poisoning occurs -- it's "not a reversible problem."

"What people have to know when they start this is that it's totally unproven -- disproven -- and dangerous," Baratz said. "It is bogus; there is no evidence it works, and plenty of evidence it doesn't."

Dr. Richard Deth, a professor at the College of Pharmaceutical Studies at Northeastern University, has testified before Congress and believes there is a link between autism and Thimerosal, the mercury preservative widely used in vaccines until a few years ago. Deth says autistic children lack the ability to cope with, or excrete, mercury like other children. "Where did it go? The answer is, probably in the brain," he said.

Deth said chelation would be a logical treatment for acute mercury poisoning, but he questioned whether "chelation could get at mercury in the brain." Another problem, he said, is that chelation drugs can remove metals that have an essential role in the body.

Doug Kertscher, a lawyer in Atlanta, has handled cases of botched chelation therapy and has found that some doctors are better than others.

He said: "I don't think in any way, shape or form that chelation cures autism." But he said that the alternative doctors who are part of Defeat Autism Now do seem to follow strict guidelines for administering chelation.

Last year, Kertscher was part of a team of lawyers that settled multiple lawsuits against a Georgia doctor who performed chelation on autistic children. The Edelson Center for Environmental and Preventative Medicine, a Georgia clinic, had been kicked out of the Defeat Autism Now network and is now closed, he said. Lawsuits alleged that children had been hurt by Edelson's treatments, which "included not just chelation but this really awful sauna therapy," Kertscher said. He said a witness testified that children would be held down in the sauna. "They would be screaming to get out and kicking."

"The parents are very vulnerable. . . . Wouldn't you give up all your retirement [money] if this guy really convinced you and was a great salesman and showed you all kinds of charts?" Kertscher said. "You'd sell your cars and triple-mortgage your house to try to cure your child, and that's what happened, time and time again."