Palm Beach Post - Families hope, critics scoff

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Families hope, critics scoff

The number of children diagnosed with autism has risen dramatically.

Some parents believe they have found a cure: Chelation.

By Horvath Palm Beach Post Staff Writer

Sunday, May 01, 2005

BOYNTON BEACH — Six-year-old is 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.

is 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 and Theresa Winter of Boynton Beach it's a hard-won

reward.

Six months ago is, who is autistic, never hugged or kissed them.

" Her demeanor has changed, " 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People with autism are usually withdrawn, sometimes speaking very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

is 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. Levinson —

is' 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 15-minute session with

Levinson, who gives intravenous chelation drugs to their daughter

once a month.

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, " 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 , 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.

, 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. 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 Winter's hope for is.

" 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. "

is' 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. 's Medical Center in West Palm Beach

diagnosed is with autism when she was 4. She started attending

what was then St. '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

is. 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 is.' "

The family directed the Winters to Levinson's clinic, and over the

next two years is began treatments including high doses of

supplements, a wheat-free and dairy-free diet and chelation.

Gradually is 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 is 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, " 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.' "

is 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

is 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. "

is 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 is' autism, but no one tracks how much money families

like the Winters spend annually on autism therapies and treatments.

Dr. 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.

, a salesman at Mayors Jewelers, and Theresa, an office

worker, say they live paycheck to paycheck. is 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.

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.

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. "