Bridging autism's distance

Parents are turning to alternative interventions such as metal-stripping drugs, antioxidants and special diets to help their children, but experts say the costly approaches are unproven.

Anne Hart | 912.652.0374 | anne.hart

When your son flaps his arms repetitively, walks in circles on tiptoes, rocks back and forth, doesn't make eye contact or say a word at 20 months old, it's hard to listen to pediatricians who tell you to be patient.

Or to specialists who say there's no medical treatment except intensive behavioral therapy; then, as the child grows older, psychiatric drugs.

That's why many parents of children with autism, a complex developmental disorder that impairs ability to communicate and socialize, are sinking big bucks in alternative, sometimes risky, unproven medical treatments. They say such interventions are saving their children.

"Our child is going to be cured,'' said Kristi Taylor, mother of 6-year-old Davey, diagnosed with a mild form of autism at 20 months.

"Your most precious thing is your child. When you know there is a cure out there, you are going to do what it takes to find it.''

Her husband, David, adds: "You cannot tell me there is nothing for my child.''

The Taylors of Skidaway Island, are among a number of parents and medical experts nationally who contend the type of autism seen in children today is the result of mercury poisoning and genetic factors.

The Taylors believe some children are genetically more vulnerable to mercury exposure. They point to various sources of mercury: certain types of fish including tuna; coal-burning power plants; medications; dental fillings; and vaccines.

Thimerosal, a mercury-based preservative, was commonly used in childhood vaccines until 1999. As of mid-2000, vaccines for infants and young children are available without the preservative or with trace amounts.

Differing views

Autism affects one in 166 U.S. children, an increase from about two in 10,000 in the late 1980s, according to the Centers for Disease Control and Prevention. It is four times more common in boys than girls.

Most children are diagnosed at 2-3 years. Early warning signs include the child not making sounds.

By 12 months, a healthy child should be babbling and gesturing. By 16 months, he or she should be able to say a word.

That didn't happen with Davey.

Parents who believe autism is related to mercury exposure say the condition can be treated with biomedical interventions including drugs that strip the body of metals as well as a special diet. It's an approach advocated by the Autism Research Institute's Defeat Autism Now project, also known as DAN!

"We are getting our children back that autism took from us at 18 months or 2 years old,'' David Taylor said.

Some mainstream experts disagree. No conclusive evidence shows thimerosal is linked to autism and no clinical trials have proven that expensive biomedical treatments work, said Dr. Eric Pearlman, pediatric neurologist and director of pediatric education at Memorial Health University Medical Center.

"I'm not convinced that trace amounts of mercury have anything to do with autism,'' said Pearlman.

He believes thimerosal was reduced in vaccines, not because of a link to autism, but for other reasons, including a growing reluctance among parents to have their children vaccinated.

"I strongly encourage parents to vaccinate their children,'' said Pearlman. "The diseases you are preventing with the vaccinations can be much worse than the theoretic complications that occur.''

Vaccination debate

More children are vaccinated today than ever before, federal officials said earlier this month. About 81 percent receive all recommended shots by age 36 months, up from 73 percent in 2000.

In 1980, infants were vaccinated against four diseases: diphtheria, tetanus, pertussis and polio.

Today, most receive up to 15 shots of five vaccines by the time they are six months old. They also receive up to five additional shots of seven more vaccines by age 2.

"For the most part, the childhood vaccines that are available today do not use thimerosal, except the influenza vaccine,'' said Dr. Diane Weems, chief medical officer at Chatham County Health Department. Preservative-free flu shots are available for infants.

"The benefit of vaccines outweighs any risk and if you look at the studies to date, they have not been able to substantiate a relationship between vaccines and autism.''

A May 2004 report by the Institute of Medicine in fact ruled out the link.

But the Taylors say such studies are influenced by vaccine makers and insist on the link between autism and mercury vaccines.

They're buoyed lately by several developments supporting such a connection including David Kirby's new book "Evidence of Harm'' and a June article in Rolling Stone magazine by Bobby Kennedy Jr. Kirby is a health and science freelancer for the New York Times and Kennedy is senior attorney for the Natural Resources Defense Council.

The Taylors' concern is that older vaccines that contain the preservative may be on doctors' shelves. Or newer ones may contain trace amounts.

They say they are not anti-vaccine, but want safer vaccines and a safer vaccine schedule that spreads out the shots.

"If I am advocating for safer air bags, I am not anti-car,'' David Taylor said.

New approaches

Last week, Davey Taylor started first grade at Hesse Elementary. He is in a mainstream classroom at his parents' request.

He has begun answering questions, even talking out of turn, a problem teachers who knew Davey last year when he struggled with speech, are relieved to see, Kristi Taylor said.

He is improving, his parents said, because they went against what many mainstream medical experts recommend.

"Too many doctors just pull out a pad and say "Here's a prescription for Ritalin and when that wears out, you're on Paxil,'' David Taylor said.

Traditional intensive behavioral therapy played a role in Davey's improvement.

But so did more controversial therapies, his parents said, including eating a special diet free of wheat and dairy; taking the antioxidant glutathione since many autistic children are deficient in producing glutathione; and taking metal-stripping drugs, or chelating agents, often used for people who have mercury or lead poisoning.

Earlier this year, Davey started chelation therapy under the care of Dr. Jeff Bradstreet, a Melbourne, Fla.-based physician.

The detox chelation process uses an amino acid that binds with heavy metals, allowing the body to excrete them.

Tests had shown Davey's mercury levels met the government criteria for mercury poisoning, his parents said.

Critics of chelation say EPA recommendations for mercury poisoning were based on studies of methyl mercury, not ethyl mercury. Thimerosal contains about 50 percent ethyl mercury.

Chelation usually involves using one of three drugs which come in oral or cream form. Sometime it means applying a cream called TTFD that has a skunk-like order and is so potent parents are advised to wear gloves when applying it because it can affect teeth fillings.

Children undergoing chelation also take a special injectable form of vitamin B12 and are on supplements to counter the possible side effect of flushing out ''good" heavy metals such as magnesium.

Every other day, Davey takes a metal-stripping drug called DMPS which the Autism Research Institute says may be more effective in eliminating mercury than DMSA, an FDA-approved chelation drug.

Davey also takes 14 over-the-counter supplements and three to four that come in a cream form to replace any essential nutrients. His liver and kidneys are closely monitored.

Davey may undergo chelation for six months to a couple of years.

As a result of the treatment, his parents said, Davey's repetitive behavior has decreased.

He once couldn't tolerate certain textures, such as the feel of sand on his hands and feet, or sounds, such as the hair dryer. He used to cover his ears with his hands when he entered the Aquatic Center.

Today he plays in the sand at the beach. His sensitivity to textures and sound have also diminished while his eye contact has increased.

But there is still far to go. Children undergoing certain types of chelation often regress during the second month of treatment as the Taylors say Davey did.

The improvement the Taylors savor the most is Davey's ability to speak.

Davey has changed from speaking in choppy words and not using pronouns to saying sentences such as "I want yellow juice.'' Or, when Daddy goes to his teaching job: "Please don't go. I will miss you.''

"We cannot wait until we get to the point of being irritated by what he says,'' jokes David Taylor.

Next month, the Taylors start Davey on one of the newest treatments for autism: hyperbaric oxygen treatment, or HBOT, at Bradstreet's Florida practice. The goal is to reactivate dormant brain cells by increasing their supply of oxygen-rich blood, a result of raising atmospheric pressure and providing supplemental oxygen.

The Taylors hope to eventually purchase a $20,000 hyperbaric chamber for home use. They'll share the chamber and cost with two other local families with autistic children if Davey's initial 10 treatments ($80 each) are effective.

Medical vs. behavioral therapy

But chelation comes with a downside, medical experts warn. Not only are such drugs expensive, but they are unproven, and some say, dangerous.

Possible side effects include bone-marrow and liver problems, according to Bill Ahearn, director of research and a behavioral analyst at the New England Center for Children.

The Massachusetts-based school research center supports Applied Behavior Analysis as a mainstay autism therapy. Ahearn opposes using chelation.

"Chelation is only effective for true heavy metal poisoning. The rationale for chelation therapy for autism is baseless,'' he said.

Dianne Wilson-Evatt, new director of Legends Learning Center in Savannah, has seen success with applied behavioral therapy in nine years of working with autistic children.

Legends is based on ABA, which involves structured positive reinforcement, rewarding children for good behavior. It's done on an intensive, consistent basis. Rewards include social praise, a favorite food or just watching a favorite video for a minute.

The goal is for the child to behave well solely for the reward of getting along with others.

But supporters say they've seen too many improvements in children undergoing chelation and other biomedical therapies to only advocate ABA.

Pharmacist Tyrus Smith at Coastal Compounding Pharmacy in Savannah fills thousands of prescriptions for low-doses of metal stripping drugs worldwide and for about 70-100 patients in the Coastal Empire.

Off all the biomedical therapies, Smith believes metal-stripping is most important.

"It's amazing when you have a mama call you crying because her little girl said for the first time said' I love you,'' Smith said.

From skeptical to supportive

Statesboro physician J.P. Landry supports chelation and other biomedical approaches along with behavioral therapies. But it took having a grandson with autism and a granddaughter with Aspergers syndrome (a less severe disorder classified on the autism spectrum) to convince Landry to try what he first thought were unsubstantiated tactics.

His grandson, Marc, 5, used to bang his head on the floor and windows "just like a butterfly or bird loose from the cage.'' The child was taking four psychiatric drugs before Landry agreed to try the biomedical approach.

Now Landry believes glutathione, a special diet and chelating drugs, as well as behavior therapy, helped bring back his grandson.

The child changed from saying only "walk'' and "water'' a year ago to holding conversations today, Landry said. Today Marc asks his grandfather "May I ride my bike with you?'' or "I like being here with you.'' His sister, Melodie, 3, also is on the biomedical treatment and improving, Landry said.

Landry has since trained to become a DAN! physician and changed his Statesboro practice to follow the biomedical approach.

"I can vouch that what they are saying is real,'' said Landry, who sees autistic patients from as far as Montreal. His patient waiting list is booked until October.

"Autism is treatable,'' Landry said.

"With the biomedical and ABA approach combined, there seems to be a great deal of success.''

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AUTISM IN THE CLASSROOM

When classes started this month, Savannah-Chatham public schools had about 130 children with varying degrees of autism.

In the past two years, the district has seen the number of autistic children increase by the end of each school year.

The state-funded "Babies Can't Wait" program, offered through the public health department, provides speech/occupational therapy and special instructional therapy until the child turns 3.

The Savannah-Chatham school district added two transitional classrooms for students with autism to address the need. The district hired six people in the past two years to work exclusively with autistic students. Two years ago, the district only had one autism specialist.

"I wouldn't call it an epidemic. But we are seeing an increase,'' said Mikki Garcia, executive director of the Savannah-Chatham district's department for exceptional children. "We've had to expand our services and our supports.''

Many mainstream experts say more autism cases are the result of having more tools to identify autism, greater awareness and more funding to care for those with autism.

The district's two transitional, structured classrooms are for pre-K, kindergarten, first-grade autistic children. They are at Marshpoint and Pooler elementary schools. Each is language-based and has a maximum of 10 children.

"The goal is that we equip the child so by the end of the school year, they will be ready for a general classroom,'' Garcia said.

LOCAL SUPPORT

l Babies Can't Wait: 351-6713

l Savannah Speech & Hearing Center: 355-4601

l The Matthew Reardon Center: 355-9098

l Andrew's Answer: 691-0790

l Kicklighter Resource Center & Legends Learning Center: 355-7633

l Children's Therapy at St. Joseph's/Candler, call: (912) 819-6176.

By the numbers

Below are the autism counts for the past two school years and this school year. Last year and this year are the same because data entry has yet to be done yet for this year.

2003-2004: 80 at mid-year; 100 at end of the year

2004-2005: 114 at mid-year; 132 at the end

2005-2006: estimated 132 at the start

WEB RESOURCES

*Institute of Medicine lists vaccine safety reports: www.iom.edu/

*Generation Rescue advocates removing mercury from children's body as a cure for autism: www.generationrescue.com

*New England Center for Children advocates Applied Behavior Analysis as an autism treatment: www.necc.org/

*The Autism Research Institute's Defeat Autism Now advocates bio-medical treatments as one approach to autism: www.autismwebsite.com/ari/index.htm

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THE HIGH PRICE OF TREATMENT

Chelating drugs and accompanying costs are not covered by insurance.

"Some people unfortunately have to mortgage their home to get their children treated,'' said J.P. Landry, a Defeat Autism Now physician in Statesboro.

The Taylors said they can afford the approach because David teaches for four online universities in addition to his job as a professor at Armstrong Atlantic State University.

Here's a look at costs based on Landry's estimates:

| $700 for the first visit to Landry which includes DNA testing

| $150 per hour for follow-up visits

| $90 a month for the DMPS

| $45 a month for vitamin B12

| $45 month for glutathione

| $200 a month for nutrients

Biomedical therapies aren't the only expensive approach. Having a child in a center like Savannah's Legends Learning Center, based on applied behavioral analysis, can run close to $1,000 a month.

Of Legends' 64 children from 6 weeks to 5 years, 11 have some type of learning disability such as autism, speech and language delays or ADHD.

Dianne Wilson-Evatt, the center's new director, is the former assistant programs director at the Jericho School for Children with Autism in Jacksonville, Fla. The private school's year-round, intense one-on-one all day program costs $36,000 a year.

Legends is based on three phases. Children who can't function in a typical classroom start in phase one ($220/week), the most intensive phase, then to phase two ($180/week) and work toward being in a typical classroom, phase three ($95/week).

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