Autism and toxinsHis parents and his school are amazed at the progress an autistic little boy named Charlie Blakey has been making.
The transformation began right after Charlie started a treatment most experts say is useless -- and possibly dangerous.
The treatment, called chelation, removes mercury and other toxic metals from the body. The theory is that the mercury kids received from vaccines caused their autism.
Since undergoing chelation, Charlie has had fewer temper tantrums and is spending less time walking around in circles. He is talking more and is easier to understand. And, there's been a big jump in his language test scores.
Charlie's mom pleased
"The brain fog lifted," said his mother, Christina Blakey, of Oak Park. "He just started picking things up. They couldn't teach him fast enough."
No one knows how many autistic kids are undergoing chelation, but by most estimates, the number is in the thousands or even tens of thousands.
Dr. Anju Usman, who prescribed Charlie's chelation, has 1,000 autistic kids in her practice, and a two-year waiting list of 500 patients. The Naperville family practice physician is among a handful of doctors in the country who prescribe chelation. Usman recommends chelation when other treatments don't work. "Parents see kids get better and they tell one another," Usman said. "It's the results that bring them here."
The chelation movement is a grass-roots revolt against mainstream medicine, which has been unable to find out what causes autism or how to cure it.
People are desperate for cures
Government agencies and leading medical groups, including the U.S. Centers for Disease Control, American Academy of Pediatrics and Institute of Medicine, say there's no evidence to support chelation, or the theory behind it.
"The word chelation strikes a chord of disgust in most physicians," said Arizona State University autism researcher James Adams.
So why do parents persist?
"Autism is a very difficult disease to live with. People are desperate for cures and desperate for solutions," said child autism specialist Dr. Bennett Leventhal of the University of Illinois at Chicago.
Childhood vaccines used to contain thimerosal, a preservative that contains mercury. (Charlie was vaccinated right before manufacturers began phasing out thimerosal.)
Chelation proponents say autistic children for some reason are unable to excrete mercury from their bodies. They note that some autism symptoms are similar to mercury poisoning. An increase in reported autism cases coincided with the expanded use of childhood vaccines.
However, the Institute of Medicine reported in 2004 that there's no link between vaccines and autism. The institute said five large studies in the United States, United Kingdom and Denmark found no association between thimerosal and autism.
Chelation drugs come in pills and creams. They are approved for the treatment of lead poisoning, but are being used "off label" to remove mercury.
One risk of chelation is that it removes essential minerals such as zinc and calcium along with the bad stuff. Chelation also can stress the liver and kidneys.
Last year, a 5-year-old Pennsylvania boy undergoing chelation went into cardiac arrest and died. A CDC doctor later blamed the death on a drug mix-up. Rather than receiving the intended chelation drug, the boy was given a look-alike and sound-alike drug that pulled too much calcium from his blood.
A survey by the Autism Research Institute, which promotes alternative therapies, found that 76 percent of parents who have tried chelation say their children improved. That's a higher reported success rate than for any other drug, supplement or special autism diet, the survey found.
But just because parents notice an improvement doesn't necessarily mean chelation is the reason, Leventhal said. It could be because of the expectation effect: Parents believe in the therapy, so they become convinced it works. And Leventhal said children naturally improve as they get older.
The skeptics note that before chelation, parents used another untested treatment, the intestinal hormone secretin. After anecdotal reports that secretin helped autistic children, many parents began giving it to their children. But more than a dozen subsequent studies showed it doesn't work, said Dr. Scott Myers, a member of the pediatrics academy's autism panel.
The same thing now may be happening with chelation, Myers said. "The therapy has gotten way ahead of the evidence."
The only way to prove whether chelation works is to conduct a randomized, placebo-controlled, double-blind study: Take a group of autistic kids. Randomly assign half to receive chelation and half to get an inactive placebo. To prevent bias, neither the parents nor the researchers doing the evaluation should know who got what.
No such research has been done. But at least one study, involving 80 children, is under way at Southwest College of Naturopathic Medicine in Arizona.
'I'm the expert on my child'
As many as 1 in 166 children are on the "autism spectrum," which ranges from mild to severe. They have impaired social and communication skills and tend to repeat behaviors and routines. In the most severe cases, children do not talk at all or simply parrot back what is said to them. Many wind up institutionalized.
Charlie Blakey, 6, is mildly autistic. His mom first suspected something was wrong when he was an infant. He suffered a digestive disorder, threw up frequently and screamed nonstop. At 10 months, Charlie still wasn't sitting up, crawling or babbling.
He spoke his first word, "ball," at age 2. But he was hard to understand and had almost no communication skills. He was trapped in his own world, unable to explain when something was bothering him. "Our days were filled with him screaming at everything," his mother said.
At 3-1/2, Charlie began pacing back and forth in the living room, oblivious to everything around him. He once paced 2-1/2 hours nonstop.
At age 41/2, Charlie went on a wheat- and milk-free diet, restricted to such foods as rice milk and potato-flour muffins. "His symptoms were very much improved, but he was still autistic," his mom said.
Charlie began chelation in October 2004. He takes supplements to replace essential minerals that are removed by the treatment and has blood tests every two to three months to make sure there's no liver damage.
Before chelation, Charlie scored in the 1st percentile of language tests, meaning he was behind 99 percent of kids his age. He has since jumped to the 12th percentile in speaking ability and the 34th percentile in speech comprehension.
Arlene O'Meara, a teaching assistant assigned to Charlie at kindergarten, noticed a big change. Instead of throwing tantrums, Charlie could tell what was bothering him. "He became more verbal all of a sudden," O'Meara said.
Blakey's parents plan to continue chelation for another year or so. His mom thinks it's possible Charlie can move from the autism spectrum to the normal range.
Despite what the experts say.
"I'm the expert on my child," she said. "I have to go with what I see working with him."
jritter at suntimes.com
walkin on 2006-02-13
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