NJ Family Takes Alternative Steps To Help Autistic Girls

[Guest guest]

NJ Family Takes Alternative Steps To Help Autistic Girls

Parents believe vaccines at fault

By Colleen O'Dea For The Daily Record http://tinyurl.com/ycd5xh

For years, Rose and Gayle DeLong did the best they

could for their daughters, both of whom are autistic, going beyond

simple special education programs and trying commonly accepted methods

to improve their behavior.

Then, in April 2005, Kirby's book, " Evidence of Harm, "

which explores a possible link between mercury in vaccines and the

explosion in cases of autism, made them think they could do more.

Now, almost 18 months after starting their daughters on a strict

regimen of alternative therapies that includes near round-the-clock

vitamins and supplements, a gluten-free diet and hyperbaric oxygen

treatments, they finally feel they are really helping , 10, and

Flora, 6.

" Both our daughters have shown clear improvement, " Rose

said.

" enters conversations more easily, and Flora has more eye

contact, " DeLong said. " Concerning school, continues to do well.

Her grades are going from mainly Bs to As and a few Bs ... (Flora) has

trouble focusing, but does well once she is focused. "

Possibly treatable The big news, Rose said: " Autism may be

treatable, even curable. "

This view, like questions about whether childhood immunizations

have caused the meteoric rise in autistic children, is hotly debated.

The U.S. Centers for Disease Control and Prevention's position

is that there is no cure for the numerous disorders that fall under

the umbrella of autism. The agency pushes traditional educational and

behavioral treatments, as well as the use of some medicines to relieve

symptoms.

Not everyone even agrees that there has been a real increase in

cases of autism over the last two decades, despite the data.

The number of students in the United States considered autistic

has risen from about 5,200 in 1991 to more than 192,000 last year,

federal education statistics show. That's an increase of close to

4,000 percent. Where the autistic represented one-tenth of 1 percent

of all special education students in 1991, they comprised more than 3

percent of the total in 2005.

In New Jersey, nearly 7,400 children in special education

classes -- or five of every 1,000 students -- were considered autistic

last year, according to the state Department of Education. That's an

increase of 60 percent in three years.

Today, the CDC estimates that as many as 1 in 166 children

across the country has autism.

Some researchers say the rise is due to an increase in

classification of children as autistic -- the definition was only

fully recognized by all states in 1994 -- but others say the data

don't support that because there haven't been declines in any other

special education categories.

Many parents and several organizations believe an increase in

childhood vaccinations caused the increase.

Rose and DeLong, both college professors, said their daughters

each were diagnosed with autism around age 3½. They used the typically

prescribed treatment: behavior analysis and modification techniques

with both. These helped , but not Flora.

Vaccine theory Then the couple read " Evidence of Harm. " In his

book, Kirby says it's impossible to say whether the thimerosal, which

is about half mercury, used as a preservative in vaccines, causes

autism in some children, but he lays out a convincing case that it

might. The book notes that two series of shots were added to the

vaccination schedule in the 1990s, around the same time the dramatic

increases in autism began.

Appearing on " Meet the Press " in August 2005, Kirby said the

amount of mercury injected into children during that time far exceeded

federal safety limits. For instance, at age 2 months, children got

three shots totaling 62.5 micrograms of mercury, which was about 125

times higher than the level considered safe by the U.S. Environmental

Protection Agency.

" Mercury is toxic, " Kirby said. " It's a known neurotoxin. If it

gets into the brain, it could stay there virtually forever ...We

really need to look at what this mercury is doing inside the bodies

and brains of these children if we're going to solve this mystery one

way or another. "

There's no question for Rose and DeLong.

" We believe the mercury in vaccines caused our

daughters'autism, " Rose said. " The symptoms of mercury poisoning and

autism are the same. "

So with a cause, they searched for a cure.

Last summer, they found Dr. Stuart Freedenfeld, who practices in

Stockton, Hunterdon County. He is one of a number of doctors working

with the California-based Autism Research Institute on autism causes

and treatments. Freedenfeld began treating autistic patients -- he's

seen about 400 -- nine years ago.

" Mercury, aluminum, nickel, we find high levels of toxic metals

in a good number of children, " Freedenfeld said. " What we do with

these children some might look at and say it's alternative medicine.

It's not. It's very well-documented medicine. "

He believes, as do many other doctors and researchers, that it's

a combination of toxins in a child's system and a genetic inability on

the part of only some to handle them that leads to autism. That

explains why so many children who have been vaccinated or exposed to

other toxins don't develop problems.

The treatment centers around chelation, which involves

administering substances to help rid the body of mercury and other toxins.

Freedenfeld performs tests to determine the levels of toxins in

a child's system and then tailors a plan of supplements, including

magnesium, zinc, some B vitamins and essential oils, to the child's

needs. He also strongly recommends a diet free of gluten and casein

-wheat and dairy -- because almost 90 percent of autistic children

have trouble digesting those and they can act as morphine-like drugs

in a child's system. He may recommend other therapies, such as

hyperbaric oxygen treatment, as well.

One cabinet in the Rose kitchen, plus a shelf in the

refrigerator, are devoted to all the supplements for the girls and

DeLong, who had herself tested and also had high levels of mercury in

her system. There are creams, injections and intravenous pushes, in

addition to pills. The girls receive their first supplement at 6:30

a.m. and their last at 11 p.m.

'30 supplements a day'

" There are about 30 supplements a day and we have to do them at

certain times, " said DeLong, adding the girls are good about sitting

for injections.

The couple recently bought a home hyperbaric oxygen chamber,

inside which a person breathes pure oxygen, for DeLong and the girls,

having had success from a series of treatments through Freedenfeld's

office.

The couple tracks their daughters' progress with thick pink and

blue binders that hold medical results, which show a reduction in

mercury and other toxins in their systems, and, in 's case,

higher scores on school standardized tests.

More important are the behavioral results they see, which are

not as easy to quantify, but just as real, they said.

It's hard to tell there's anything amiss with . She plays

with her younger sister, smiles for a camera and willingly tells a

visitor she doesn't mind all the medicines she takes.

" I like it when it's chocolate, " she said of one protein powder.

" The place where I see the most improvement is socially, " said

Mizrahi, a teacher at Woodland School, who had in third

grade, before the alternative therapies, and now has her in fifth

grade. " She socializes with other students on the playground: She

talks to them; she plays games with them. It's definitely a huge

improvement.

" She always got it academically, but now she raises her hand and

asks questions in class, too. "

Flora's gains are not as apparent. She reads Dr. Seuss books and

likes to watch " Little Einsteins. " But she is quieter and

uncomfortable around visitors. Yet just the fact that she can tolerate

two strangers in her home without becoming upset is an improvement.

The couple believe Flora's case has been tougher to treat

because, in addition to her regular vaccinations, she also was getting

a flu shot each year at her wellness checkup, since her birthday falls

in the winter. An August baby, has never gotten a flu shot.

While the federal Food and Drug Administration conducted a review that

found no evidence of harm from the use of thimerosal in vaccines, it

got drugmakers to virtually eliminate its use. Flu vaccines are among

the only ones that still contain any substantial amounts of thimerosal

today.

Hope of recovery The California-based Autism Research Institute

says children can recover from autism.

" We have found that an extremely individualized approach to each

child leads to the best outcomes, " said Matt Kabler, an ARI spokesman.

" Children have recovered in as little as two years and others are in

the process of recovering for many more years. "

But Dr. Harvey Fineberg, president of the U.S. Institute of

Medicine, cautioned that there is no clinical proof that chelation is

effective in relieving the behaviors of autism.

" When you have a single story and a repeated story of an

experience that a parent has with a treatment like chelation, you have

to keep in mind that the history of medicine is strewn with discarded

treatments that people at one time believed in very, very strongly, "

said Fineberg, who appeared on " Meet the Press " with Kirby. " When you

have one case after another, it's one anecdote after another, and the

plural of anecdote in scientific terms is not evidence. "

" Most children see improvement from the very first

visit, " Freedenfeld said. " I'm not going to stop until their children

are fully recovered, that's my promise to parents. "

He estimated that about 20 percent of his patients see a full

recovery and as many as 60 percent see marked improvement.

" From data collected from thousands of parents, chelation,

special diets and supplementation (vitamin and mineral) are the most

effective biomedical therapies, " said Matt Kabler, a spokesman for the

ARI. " Unfortunately, the mainstream medical community does not believe

that autism is treatable and therefore most of these alternative

interventions that are working are not covered by most insurance

companies. "

In the case of the Rose girls, insurance has covered only a

small portion of their costs.

" We've gone to some personal expense, " said Rose, but

the couple believes it's worth it.

Freedenfeld said insurance won't cover vitamins and different

foods, though it will cover his office visits.

" But what's worse, they'll pay to put the toxins into the

children, " he said.