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Controversial autism therapy used in Del.

Chelation blamed for Pa. death, but some parents say they have no choice

The News Journal/WILLIAM BRETZGER

01/17/2006

Jacoby Dent refused to get on an elevator two years ago. He'd kick burgers and drinks off tables at the mall food court. He'd pound his head against the floor and claw his face with his fingernails.

His parents, Greenwood residents Joe and Lisa Dent, couldn't cut his fingernails, couldn't cut his hair, couldn't understand him, kiss him or touch him.

Jacoby, now 4, was diagnosed with autism when he was 2. In April 2004, his parents put him on chelation, a treatment that removes heavy metals from the bloodstream, usually through urine or stool. The Food & Drug Administration considers chelation a risky treatment for autism, but the Dents say it has vastly improved Jacoby's and the family's lives. Jacoby, who hasn't used the treatment since September, also was given other remedies.

But Lisa Dent said "chelation was the key."

"One month after chelation, there were noticeable differences," she said. "He started allowing us to get his hair cut and his nails clipped. The speech came back. The first birthday he recognized was that year he started chelation."

Because of chelation's success, Dent said her son now wouldn't meet the criteria to be considered autistic.

She resents being called a desperate parent, a phrase that has been used to describe adults who use chelation to treat their autistic children.

It's a disease many parents believe is caused by a high amount of heavy metals in the body.

While the FDA has approved chelation for treatment of lead and heavy metal poisoning, the agency has not approved it to treat autism because it is considered risky and ineffective. A coroner from the Pittsburgh area recently ruled that the Aug. 23 death of a 5-year-old autistic boy was the result of intravenous chelation therapy. The boy died from cardiac arrest.

Newark resident Beverly Greene gives her 9-year-old son, Wesley, chelation transdermally, or through the skin. Insurance doesn't cover his treatments. She pays $172 per bottle of the liquid cream, which lasts two months and is applied to Wesley's forearm.

The first thing Greene noticed once Wesley started chelation was a drop in the frequency of his seizures.

"It's not controversial," she said. "Just because someone doesn't understand something doesn't mean it's controversial."

Finding the problem's source

Autism is a term used to refer to a group of neurologically-based developmental disorders in which individuals have trouble with social skills. People who have autism have a penchant for repetitive behaviors and interests. Typically diagnosed during toddler years, autism occurs in all races.

Some people believe the disease is caused by vaccines preserved with thimerosal, which contains mercury.

In chelation, a synthetic solution known as EDTA (ethylenediaminetetraacetic acid) is introduced into the bloodstream to remove heavy metals such as copper, lead and mercury. The treatment is typically administered intravenously, orally, rectally or transdermally.

In 1999, the FDA -- despite finding no harm from thimerosal -- requested that it be reduced or eliminated from vaccines as a precautionary measure. On its Web site, the Centers for Disease Control and Prevention reports that none of the vaccines used in the United States to protect preschool children against infectious diseases contains thimerosal, though it warns some flu vaccines do.

But Bernard Rimland, director of the Autism Research Institute, said thimerosal is still in some vaccines and can be linked to autism.

The institute, headquartered in San Diego, supports the work of Defeat Autism Now doctors, many of whom prescribe chelation treatments. Both Jacoby Dent and Wesley Greene were seen by DAN doctors.

"Among knowledgeable people, chelation is not controversial," said Rimland, who is also a research psychologist. "Ignorant people have great hostility to it. One child died while undergoing chelation treatment, but he's the only death that has been reported for 50 years."

Rimland said a highly organized effort by the drug industry has prevented the FDA from recognizing that mercury in vaccines has led to autism.

"If they recognized it, Congress would ask them why they used it without safety testing," he said.

Phone calls to the FDA for this story were not returned.

Risky treatment

Dr. Adrian Sandler, medical director of Olson Huff Center at the Mission Children's Hospital in Asheville, N.C., called Rimland's accusation "nonsense."

"Any researcher can develop a research protocol and get that study funded without having to do it through a drug company," he said. "The reason that the FDA hasn't approved [chelation] is because there is absolutely no published peer-reviewed research that shows chelation therapy has any role to play in autism."

Sandler co-authored an American Academy of Pediatrics article that said chelation is neither safe nor effective as an autism treatment. He said children could die from either a severe allergic reaction or severe liver damage stemming from chelation.

He pointed to a 2004 panel by the Institute of Medicine, a federal scientific advisory agency under the National Academy of Sciences, that reviewed several reports on the issue and rejected the idea that vaccines containing thimerosal caused autism. Parents who have seen dramatic changes in their children after chelation treatment may have fallen under the spell of the placebo effect, Sandler said.

"When a parent starts something new, they want to know if it's helping and they start engaging their children more," he said. "That change in parent behavior can lead to improvements."

The debate has not swayed Greene, who plans to continue using chelation on her son.

"I have no choice," she said. "Autism has robbed Wesley of his childhood, and I want to see him get it back."

Contact Hiran Ratnayake at 324-2547 or hratnayake@delawareonline.com.
"Jacoby Dent refused to get on an elevator two years ago. He'd kick burgers and drinks off tables at the mall food court. He'd pound his head against the floor and claw his face with his fingernails."


He was 2 when he did that. A lot of toddlers do those things. Chelation is not an answer. Its russian roulette.

Amy Wrote:
"Jacoby Dent refused to get on an elevator two years ago. He'd kick burgers and drinks off tables at the mall food court. He'd pound his head against the floor and claw his face with his fingernails."


He was 2 when he did that. A lot of toddlers do those things. Chelation is not an answer. Its russian roulette.


Seems like parents don't have a clue what parenting means and what children will do, any more.  I guess parents exspect babies to be born all knowing and well behaved that problems are the blaim of diseases that needs to be cured.

Thats why I think the word "disease" has a different meaning these days. I think "disease" means an event that causes uneasiness and results in a problem for someone else or society.

darkcode Wrote:
I think the word "disease" has a different meaning these days. I think "disease" means an event that causes uneasiness and results in a problem for someone else or society.


I just read a very good discussion of the etymological roots of "disease" and similar words in a mother's blog (in response to a comment I had made on another post).


http://autismsedges.blogspot.com/2006/01...html#links

Unfortunately the links in my comment got messed up when I posted it, for reasons unknown (does Blogspot have a spam filter that automatically deletes links if it thinks a comment is spam?), but the damage wasn't too bad.

darkcode Wrote:

Amy Wrote:
"Jacoby Dent refused to get on an elevator two years ago. He'd kick burgers and drinks off tables at the mall food court. He'd pound his head against the floor and claw his face with his fingernails."


He was 2 when he did that. A lot of toddlers do those things. Chelation is not an answer. Its russian roulette.


Seems like parents don't have a clue what parenting means and what children will do, any more.  I guess parents exspect babies to be born all knowing and well behaved that problems are the blaim of diseases that needs to be cured.

Thats why I think the word "disease" has a different meaning these days. I think "disease" means an event that causes uneasiness and results in a problem for someone else or society.


Exactly! Just look at those children put on Ritalin and other drugs to get them to fit in society. As for that toddler doing those things, there's a reason that age is often refered to as the "terrible twos."

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