Please note the superhuman cuteness of my baby.
Mother: 'We're not waiting for the government'
bcook@fosters.comArticle Date: Sunday, July 27, 2008Ginger Taylor wasn't sure what she could do to help her son, Chandler, when he first was diagnosed with autism spectrum disorder at age 2.
Courtesy photo Chandler Taylor, 6, of Brunswick, Maine, gets biweekly chelation treatments at the Chelation Medical Center in Gray, Maine, to treat his autism.
But after the Brunswick, Maine, woman discovered how much he benefited from chelation therapy, as well as a gluten- and casein-free and special carbohydrate diet, Taylor found the answer to her prayers.
She said her son, now 6, is well on the road to recovery.
Chandler receives biweekly, 15-minute intravenous treatments at the Chelation Medical Center in Gray, Maine, to remove lead, mercury and other toxic metals from his body. The treatments use a fluid containing agents that help remove the metals from the bloodstream. He also receives "Myers" cocktails to restore minerals and vitamins to his system, Taylor said.
The family's health insurance will not cover the procedure, the cocktail or special diet supplements. Taylor said they pay $300 weekly for everything, but the results have been worth it.
She said her son also started playing better with his older brother, Webster, 7, and her neighbor's children, who are the same age as Chandler. With the help of an aide, he also has attended kindergarten in the Brunswick public schools and she is hopeful he'll do well when he attends first grade this fall.
The National Institutes of Mental Health in Bethesda, Md., proposed doing a chelation treatment study earlier this month to determine how it helps children diagnosed with autism. If the study is approved, it would mark the first time the federal government has taken a close look at an alternative treatment for autism.
While Taylor said she's pleased the federal government wants to study the benefits of chelation as an autism treatment, she said the NIMH should have done so long ago.
"Parents have been reporting for years that it has been helping their kids," Taylor said.
She also said the danger associated with chelation has been exaggerated, calling it safe if administered properly by a doctor certified by a chelation board.
"We're not waiting for the government to do anything," she said.
Doctors with Defeat Autism Now!, or DAN, believe children with autism are unable to break down metals such as mercury and lead the same way normal developing children do because their immune systems are compromised.
They believe gluten- and casein-free diets, which don't use wheat and dairy products, and alternative treatments like chelation, can remove toxic metals from children and eventually let them function normally.
Taylor said her son benefited from the diet and chelation almost immediately after he started it in California, where the family lived before moving to Maine in 2006.
She said her son "started calling me mommy again for the first time in 10 months."
Unlike a standard blood test doctors use to detect high levels of lead and mercury, Taylor said a chelation test focuses on urine. In Chandler's case, his first chelation test showed he had high levels of lead and mercury, she said.
She said the family stopped chelation for nearly two years and had his urine tested again for metals after they moved to Maine. The test showed he again had elevated levels of mercury, lead and toxins, she said.
She said she believes her son may have ingested lead from mouthing toys later recalled for having lead paint. She said her son also may have ingested lead paint from the window frames of their Maine home.
She said she's not sure if her son will completely recover from autism, but believes chelation treatments have made a huge difference.
"We are going to keep doing it until all the metals are gone," she said.
New frontiers in autism research
bcook@fosters.comArticle Date: Sunday, July 27, 2008Some advocates believe the federal government's willingness to study the benefits of chelation treatments may signal a turning point in the fight against autism.
Dr. Patrick Mulcahy
"It's long past due," said Ginger Taylor of Brunswick, Maine, who has a 6-year-old son diagnosed with autism who has been receiving chelation treatments for more than a year. "Parents have been reporting for years that it has been helping their kids."
The proposed study is one of several recent developments that may shed new light on the causes of the neurological disorder, which affects one of every 150 children, according to the federal Centers for Disease Control and Prevention.
The CDC has said 25,000 children per year are diagnosed with autism spectrum disorders and the U.S. spends $35 billion yearly in federal dollars on related services, ranging from early education programs to adult services.
But advocates are not optimistic researchers at the National Institutes of Mental Health in Bethesda, Md., will end up producing a chelation treatment study of value unless they can approach it the right way.
Dr. Susan Swedo, who heads the federal institute's in-house autism research, is the principal NIHM investigator who wants to do the study, according to Joseph Carey, an NIHM spokesman. He said the study was put on hold for safety concerns after an animal study, published last year, linked DMSA, a chelating agent, to lasting brain problems in rats.
Swedo has proposed recruiting 120 autistic children ages 4 to 10 and giving half DMSA, a chelating agent, and the other half a placebo. The 12-week test would measure before and after blood mercury levels and autism symptoms. The study outline says failing to find a difference between the two groups would contradict reports that chelation works, according to NIHM officials.
Many parents, including Taylor, also have said they're hopeful the Hannah Poling case in March in Georgia will force the federal government to study the relationship between childhood vaccines and autism. Federal health officials conceded that vaccines may have contributed to Poling developing autism.
Poling, a 9-year-old girl, suffers from a condition that affects her mitochondria. Her parents filed a claim with the U.S. Department of Health and Human Services' Vaccines Compensation Program, saying childhood vaccines she received when she was 19 months old triggered her autism.
The government conceded in March that vaccines may have hurt Hannah and has agreed to pay her family for her care.
Advocates long have contended that the mercury preservative thimerosal, which has been used in vaccines, and the policy of administering several vaccinations in one shot to children at age 2 may be the trigger that causes children with a genetic predisposition to develop autism.
Nearly 5,000 families are seeking compensation because of autism or other developmental disabilities, citing vaccines and thimerosal, which has been banned by the U.S. Food and Drug Administration since 2001 except in certain flu shots.
Earlier this month, NIMH Director Dr. Thomas Insel said his group has proposed studying chelation, currently used by doctors to treat lead poisoning.
Last year, the National Institutes of Health spent less than 5 percent of its $127 million autism research budget on alternative therapies, Insel said. He said he is hopeful the chelation study will be approved. The federal government now spends a total of $300 million each year on all forms of autism research.
Dr. Patrick Mulcahy, a Kennebunk, Maine, osteopathic physician with the organization Defeat Autism Now!, or DAN, said he's pleased the government wants to do a study.
"Overall, it's showing that the government and organized medicine is starting to validate or question that there is some valid reasoning for doing these types of treatments," Mulcahy said.
DAN formed to raise private funding for autism research, including on alternative therapies such as chelation, citing low federal spending.
Mulcahy does not offer chelation treatments, but does prescribe methyl-B-12 shots every three days to help children with autism rid their bodies of metals. He also prescribes gluten- and casein-free diets.
"I actually think the diet would be more of a fruitful study," he said.
Nationwide, at least three deaths, including one of an autistic child, resulted from improper chelation treatments, according to the CDC.
Meanwhile, researchers continue to find new genetic clues about autism's cause.
Earlier this month, Dr. Christopher Walsh and Dr. Eric Morrow of Harvard University searched for genes and mutations associated with autism in 88 families from the Middle East, Turkey and Pakistan in which cousins married and had children with autism. They studied families in which parents share ancestry because the strategy increases the chance of finding inherited genes.
The researchers reported in the July 11 issue of "Science" that they linked several gene mutations to autism. The largest group of implicated genes are involved in changes in synapses — the areas between neurons in the brain — that underlie learning. Such genes are vital to the developing brain.
"Autism symptoms emerge at an age when the developing brain is refining the connections between neurons in response to a child's experience," Walsh said.
Other NIMH funded research includes the Autism Genetic Resource Exchange, a project initiated by the Cure Autism Now Foundation. Genetic samples are being collected from several hundred families with more than one member who has been diagnosed with autism so scientists can learn more about the genes that hinder brain development.
The Autism Tissue Program has received funding from the Harvard Brain and Tissue Resource Center, the NIMH and the National Institute of Neurological Disorders and Stroke. Researchers can study post-mortem brain tissue with imaging methods.
All of those research projects involve gene-mapping, which has been the federal government's preferred track to understanding autism.
Dr. Stephen Edelson, director of the Autism Research Institute in San Diego, Calif., said the fact that the federal government even wants to study chelation could signify a turning point.
He said doctors with the American Academy of Pediatrics now are having extensive dialogue with DAN! doctors about the benefits of gluten- and casein-free diets and other treatments.
Edelson said potential research breakthroughs will happen when the medical community, federal government and autism advocacy groups come together and pool their resources. He compared such an effort to how Americans worked together at home and abroad to achieve a singular goal to win World War II.
He said he's optimistic continued public pressure from the growing number of parents with children diagnosed with autism will lead to serious studies about the relationship between childhood vaccines and the disorder.
"More is happening, but not enough," Edelson said.
