Article from Palm Beach Post: Families hope, critics scoff

CONTROVERSIAL TREATMENT: Alexis Winter, 6, has received chelation at a Miami Beach clinic. Her parents have seen her improve, but others express doubt in the treatment. Photo: Steve Mitchell

STRICT REGIMEN: Alexis takes 20 supplements a day and eats a wheat- and dairy-free diet. Twice a day her parents rub chelation cream into her hands and feet. She also sees a speech therapist.
SMALL MIRACLES: Alexis Winter’s parents, Theresa and Robert, see a difference in their daughter from monthly chelation treatments. Her tantrums have ended, and she plays with other children. ‘Before this it was like I had no child,’ her father says, adding, ‘Now I get my hugs and kisses.’

The number of children diagnosed with autism has risen dramatically. Some parents believe they have found a cure: Chelation. Six-year-old Alexis Winter was mugging for a photographer in her living room on a recent Monday night when her mom, Theresa, made a request. “Give Mommy a kiss,” Theresa said.

Alexis tore her brown eyes, magnified behind her glasses, away from the camera and gave her mother a distracted peck on the mouth. For most parents, that would be unremarkable, one of countless kisses from their child. But for Robert and Theresa Winter of Boynton Beach it’s a hard-won reward. Six months ago Alexis, who is autistic, never hugged or kissed them. “Her demeanor has changed,” Robert Winter said. “She’ll run and jump in your arms now. We’re teaching her to kiss now.”

Autism, a developmental disorder that affects a child’s communication and social interaction, afflicts an astounding one out of 166 children in the U.S., according to the Centers for Disease Control and Prevention in Atlanta.

People with autism are usually withdrawn, sometimes speaking very little, avoiding eye contact and struggling to form personal relationships and show affection.

There is no known cure.

But as the number of children diagnosed with autism increases, the search for a cure has become more pressing. The CDC reported in the late 1980s that just one in 2,500 children had autism. Now, among developmental disorders, autism is second only to mental retardation based on the number of children who have it – making it one of the fastest-growing areas of health care among children.

All of that is lost on parents like the Winters. They care only that Alexis now makes eye contact and focuses better. She has stopped having violent tantrums and spinning incessantly. They attribute her progress to a series of biomedical treatments provided by a Miami Beach doctor, including a wheat-free, dairy-free diet and high doses of vitamin supplements. But they give the most credit to a controversial treatment called chelation that strips heavy metals out of the body.

Despite a lack of research, many parents of autistic kids are trying out chelation. The chelation drugs can be given as a pill, cream, shot or intravenous infusion. No one tracks the number of autistic children receiving the treatment, but Dr. Andrew Levinson – Alexis’ doctor and the only one in South Florida offering chelation therapy – said he’s treated more than 1,000 autistic children over the last five years at his Miami Beach clinic, about 350 of them from Palm Beach County.

Not all the children did chelation therapy, but Levinson said he’s seen the treatment work enough times to make him think it’s a cure for some.

“That’s not everybody’s story,” Levinson said. “But reversing autism is possible.”

To be sure, Levinson’s opinion is not consensus. Many doctors are dubious about chelation because it’s not backed by scientific research and can cause liver and bone marrow damage because it strips minerals like zinc and iron from the body. And because chelation is expensive and not covered by health insurance, they also worry that people offering it are taking advantage of families seeking a cure. The Winters pay $200 for each 30-minute session with Levinson, who gives intravenous chelation drugs to their daughter once a month. [error in article – the price included her infusion].

But they’re willing to take on the risks and financial burden.

“If it’s going to make our child better, we’ll explore every option,” Robert Winter said. “My daughter, since we started, has made progress. That’s proof in the pudding right there.”

Old treatment, new use

Chelation has been around for decades, used to strip metals out of the victims of industrial accidents or environmental exposure. But the treatment has never been tested specifically for autism, and the evidence supporting it is anecdotal. It began being used by people who thought that mercury in children’s vaccines caused autism. An Institute of Medicine report released last year found no link between autism and the vaccines.

Some researchers have examined the mercury levels in autistic children.

A recent University of Arkansas study suggests that autistic children might not be capable of detoxifying themselves, finding that they had significantly lower levels of glutathione, a chemical produced by the body’s cells that neutralizes toxic heavy metals.

Yet another study – conducted by Jim Adams, an engineering professor specializing in heavy metal toxicity at Arizona State University in Tempe – found that autistic children secreted three times more mercury than healthy children after being given a chelating drug. Adams, whose 13-year-old daughter has autism, is now seeking permission to start a clinical trial that would test whether chelation actually helps lessen autistic behaviors.

“I get contacted by mainstream physicians regularly, asking what we’re doing now” Levinson said. “It’s kind of hard to argue with results.”

Still, many doctors and autism experts aren’t convinced that chelation works.

“There’s no evidence that chelation to get rid of toxins makes any difference in children with autism,” said Dr. Jeffrey Brosco, a developmental pediatrician at the University of Miami’s Mailman Center for Child Development. “It certainly hasn’t been tested to be safe.”

Brosco, who develops treatment plans for autistic children, said families often ask him about chelation after reading on the Internet about other children’s success stories. But he says the link between mercury and autism is weak, and if chelation really was a cure, more doctors would be jumping on board.

“The fact that people claim great success with chelation but haven’t demonstrated it works for everyone makes me a little suspicious,” Brosco said, “especially when families are asked to pay large sums for it.”

“If I had a cure for autism, I’d be using it on every kid I see,” he said.

There’s been a significant increase in autistic children over the past 15 years, meaning more parents than ever are searching for an elusive cure.

Levinson said the increase could be due to higher levels of toxic metals in the environment. But Lee Marcus – the clinical director of the Chapel Hill, N.C., center of TEACCH, which instructs parents on methods for helping their autistic children – said the definition of autism is broader today, encompassing more children than before.

“I am diagnosing kids with autism that years ago we didn’t,” said Marcus, who’s been working with autistic children for 30 years. “We’re also doing it younger.”

Long record of dashed hopes

Chelation isn’t the first treatment declared to be a cure for autism by jubilant parents and doctors.

Seven years ago the cure was secretin, a pancreas-stimulating hormone that when injected into autistic kids seemed to help them communicate. But studies later determined the drug didn’t improve autistic behaviors.

“If you track the history of autism treatment you will see this laundry list of any conceivable treatment. In the old days they were doing lobotomies,” Marcus said. “These kids have been guinea pigs. Families want a normal child.”

Normal is Robert Winter’s hope for Alexis.

“We’re not going to be around forever, and I don’t want to have to institutionalize her. I want her to live a normal life like a normal person,” he said while sitting with his wife in the family’s Boynton Beach living room. “We have hope. We’ve seen other children respond to it, 100 percent cured. That’s what I’m rooting for with my daughter.”

Alexis’ autism is complicated by the fact that she was born deaf.

When she started exhibiting strange behaviors – spinning, staring at lights for hours and banging her limbs and head as if she didn’t feel any pain – doctors told her parents that was the way deaf children stimulated themselves.

When she was 2 1/2 she received an ear implant that gave her 80 percent hearing, but the odd behavior continued.

“She’d stand in the kitchen and stare at the lights and just spin,” her father said.

Finally a doctor at St. Mary’s Medical Center in West Palm Beach diagnosed Alexis with autism when she was 4. She started attending what was then St. Mary’s Preschool for Children With Autism. It was there, at a lunch-hour meeting, that Theresa Winter met the parents of a little boy who had exhibited many of the same behaviors as Alexis. They said their son had been cured by chelation.

“He shared a video where (his son) would spin around and fall down and get back up again,” Theresa Winter said. “I just sat there and I cried. I said, ‘That’s Alexis.’ ”

The family directed the Winters to Levinson’s clinic, and over the next two years Alexis began treatments including high doses of supplements, a wheat-free and dairy-free diet and chelation.

Gradually Alexis became more affectionate, and her attention span grew, Levinson said. The tantrums ceased. She played with other children and began speaking and using sign language. She still spins, but only when she’s dancing to her mother’s Yanni CDs.

Levinson said that when Alexis arrived at his office she was severely autistic; now, he said, she’s mildly autistic and still has problems speaking, though he can’t say whether that’s because of autism or her deafness.

“I forgot how much of a success story she was,” he said while reviewing her file recently. “She’s made a vast, vast improvement.”

To her parents, the change is remarkable.

“Before this it was like I had no child,” Robert Winter said. “A vegetable, almost. Just staring off into space. Now I get my hugs and kisses and my, ‘Hi Dada’s’ and, ‘Hi Momma’s.’ ”

Alexis still has far to go. She’s learning sign language from her mother, who takes classes at a local school. She struggles to speak, emitting syllables from her barely open mouth that only her parents can understand. Though she is 6 years old, her father estimates that Alexis has the mentality of a 4-year-old and the speech of a 2-year-old.

“Thursday night we got our first sentence,” her mother said recently. “She said, ‘I want juice.’ No sign language.”

Alexis takes 20 supplements a day mixed into cups of applesauce. She eats a diet free of wheat and dairy products, with wheat-free bread that costs $4 a loaf. Every morning and evening her parents rub a chelation cream with a strong chemical odor into her hands and feet, and once a month she travels to Levinson’s office in Miami Beach to receive the intravenous chelation drugs. She also goes to school at Manatee Elementary in Lake Worth, sees a speech therapist and will start behavioral therapy soon.

The Winters estimate they spend about $3,000 a month on things related to Alexis’ autism, but no one tracks how much money families like the Winters spend annually on autism therapies and treatments. Dr. Scott Grosse, a senior health economist at the CDC, said recent estimates from studies of the financial impact autistic children have on Medicaid and private insurance suggest that their medical costs are five to 10 times greater than those of healthy children.

Robert, a salesman at Mayors Jewelers, and Theresa, an office worker, say they live paycheck to paycheck. Alexis has been rejected by Medicaid, and they are setting up a tax-deductible fund for her and seeking out grants and scholarships.

“I already borrowed from family,” her father said. “I borrowed from banks, and I cleared out my 401(k) plan. It’s rough.”

A warning from parents

Though most parents consider chelation and special diets, some worry that the procedures are too intense or don’t have scientific backing. Those that try it don’t always see impressive results.

Shelly Hedge of Jupiter tried chelation, a wheat-free, dairy-free diet and vitamin supplements with her autistic son, Collin, a 9-year-old with a sprinkling of freckles on his nose who speaks two- and three-word phrases. While she keeps Collin on the diet most of the time – eating wheat makes him irritable – Hedge stopped the chelation and the supplements when she didn’t see a significant improvement.

“For a little while there we did so many different medical things I felt like he was a guinea pig,” she said.

Brosco, the University of Miami doctor, said parents shouldn’t forgo behavioral therapies for unresearched treatments.

“There’s very good evidence that the appropriate kind of behavior interventions make a difference,” he said. “It’s a much more powerful and direct approach than pursuing a magic cure.”

But when parents learn their child is autistic, Hedge said, they often are compelled to look for that quick fix.

Sonia Kay, the educational director of the Renaissance School, a Palm Beach Gardens charter school for autistic children, said, “The parents are desperate for any kind of help.” Kay said she doesn’t think there is a cure for autism but that many autistic children grow up and learn to cope in the world.

“But there’s something about autism that doesn’t go away. . . . We all meet people in this world who are a little different,” Kay said, including people who communicate and relate differently. “Those kinds of things can remain. It doesn’t mean they can’t be happy, productive adults.”

Newspaper: Palm Beach Post

Copyright: Palm Beach Post

Published: 1 May 2005