Re: Score One for Our Side - Savannah Morning News

[Guest guest]

Oops! Here's the story and the reporter's email. Please take a

moment to express your appreciation to Anne and add any comments

you'd like. Rebuttals of some of the idiots herein would be

appreciated:

A local paxil-pusher (pediatric neurologist): " No harm in the trace

amounts of thimersoal children received. " " Don't trade in proven

safety of vaccines for 'theoretic " risk of mercury exposure. "

A Boston behaviorist: " Chelation is dangerous and hasn't been proved

effective. "

At end of article on web is a place to enter your comments directly.

Appreciate your help.

Thanks,

T.

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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.

By

Anne Hart 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 , 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, , adds: " You cannot tell me there is nothing for

my child.''

The s 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 s 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,'' 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. 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 s 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 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 s' 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,''

said.

New approaches

Last week, Davey 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 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,''

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

s say Davey did.

The improvement the s 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 .

Next month, the s 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 s 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 -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 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, 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,'' 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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