The death last week of a 5-year-old autistic boy during a controversial treatment to rid his body of heavy metals is giving pause to some families who have embraced this therapy for their own children, but many are continuing to use it.
"It may make people more cautious, but they're not stopping,'' said Marla Green of Lower Burrell, whose 6 1/2-year-old son John receives a daily spray of a natural chelating agent.
Abubakar Tariq Nadama, a Nigerian boy living in Monroeville, died after receiving an intravenous chelation treatment in a Butler County doctor's office. Police said he went into cardiac arrest after receiving an intravenous injection of a synthetic amino acid known as EDTA.
Green is a "rescue angel," representing the international Generation Rescue network launched by a San Francisco couple in May to promote the use of chelation therapy in children with autism, a lifelong neurobiological condition.
In addition to the nasal spray, John receives EDTA orally. Both of his chelation treatments are prescribed by out-of-state doctors who have been trained through the Defeat Autism Now! project of the Autism Research Institute in San Diego.
"We're helping his body do what God intended it to do," Green said. "We're taking our time. We're well comfortable with how we're doing and how he's progressing."
Although they haven't seen any marked clinical changes in their son since he began the treatments in the spring of 2004, she said fecal tests show lead and other metals are being removed.
Chrisoula and Steven Perdziola of Shaler, after four years of intense research and testing, are ready to begin chelation for their 6-year-old daughter, Eva, to rid her body of lead and mercury.
"Certainly chelation doesn't help all kids, but there's evidence that it helps some children tremendously," said Chrisoula Perdziola, who said she knows of several families who have not experienced any complications with the therapy.
The key, she said, is finding a doctor well trained in the therapy who will closely monitor it for safety. It's not something people should rush into. She, too, plans to have the treatments done by an out-of-state doctor trained in the DAN! protocol.
Dr. Roy Kerry, the Portersville doctor who was treating the Monroeville boy, has not been trained through the autism research center, according to its director Bernard Rimland.
Perdziola said the death "has made us want to fight even more for people to better understand chelation and for doctors to attend those DAN! conferences.''
The boy's family wants to establish a trust fund to advance research into the cause of autism and to assist others in need of care.
Pushing for more research also is the goal of Laura Hewitson of Pine, who established the FightingAutism.org Web site with her husband several years ago.
Her son Joshua, 5, received chelation treatments for six months through a skin cream when he was 2. She believes he has a genetic predisposition to be more sensitive to environmental toxins than typical children.
Many local families are receiving this treatment as well, she said. In surveys conducted by the Autism Research Institute, 76 percent of parents say their children have been helped by chelation; only 2 percent said they got worse.
Many, like Green and Perdziola, see chelation as a logical option because they believe there is a connection between their children's autism and the mercury preservative in childhood vaccinations.
And that is what so disturbs Dr. Paul Offit, director of the Vaccine Education Center at Children's Hospital of Philadelphia.
Scientific study after scientific study have found no connection, and it's unethical for any doctor to give chelation for this purpose, he said. He said doctors need to work harder to convince parents that the whole reason to use chelation is pointless.
"I wish there was more outrage with this death. This boy was sacrificed on the altar of bad science and that was unconscionable," he said.
"Who was watching out for this boy?''
First Published: August 29, 2005, 4:00 a.m.