Bringing Devon back
 
Globe/Noppadol Paothong

Lujene Clark of Carthage says she is persuaded her son’s regression into a form of autism was  caused by the
mercury used as a preservative in vaccines received by her 9-year-old son, Devon.    She and her husband are
lobbying to get mercury banned from vaccines.

A family's crusade

10/24/04
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CARTHAGE, Mo. - It started with him fidgeting, then continually lining up toys and other objects.

At times, he had emotional outbursts far beyond what would be normal for the circumstances. He developed allergies, eczema and asthma.

Then, after a flu shot late in 2002, all of those problems accelerated.

"It all hit warp speed, just like in 'Star Wars,'" said Lujene Clark. "Everything just became so dramatic, including his behavior."

Alan Clark, a 30-year emergency room physician, and Lujene Clark, a former nurse, didn't recognize the symptoms in their 8-year-old son, Devon.

They were shocked when the formerly active, bright-eyed child was diagnosed with a form of autism, and when they learned what they believe is the cause.

Now the Carthage couple are on what can only be described as a crusade - to Washington, D.C., and to Jefferson City, Des Moines, Sacramento and other state capitals - to ensure that vaccines are administered without thimerosal, a preservative that contains mercury. Until a government recommendation in 1999, most childhood vaccinations contained thimerosal.

Though voluntarily taken out of childhood immunizations, the preservative remains in much of the flu vaccine currently being administered to children as well as adults.

The Centers for Disease Control and Prevention, which sets vaccine requirements for the United States, rejects any link between the preservative and autism or other disorders such as attention deficit disorder, attention deficit/hyperactivity disorder and Asperger syndrome.

Devon was diagnosed with AD/HD in 2001, when he was in the first grade. A year later, after a flu shot, his condition worsened.

"He would ask the meaning of things he had known for ages," Lujene Clark said. "At first, I thought he was playing with us. Then, he couldn't seem to understand simple instructions, like to sit down and put on a seat belt.

"He started having sensory issues. If we would go into a Wal-Mart or a large store with a lot of lights and sounds, he would just go into emotional meltdown. And he went from eating anything set in from of him to only eating a few things, because certain tastes and textures bothered him. We were watching him deteriorate, and we didn't know why."

Devon also suddenly developed allergies and asthma, his mother said.

"Thimerosal attacks the immune system," she said. "We took him to an allergist. Out of 53 antigens, he reacted to 51."

Her voice chokes and tears well as Clark describes how her only child had changed.

"He'd always had the brightest, sparkliest eyes," she said. "But then after he got his flu shot, they were flat and lifeless - what I call the 'Stepford look.' He wouldn't look you in the face or make eye contact. It was like there was nobody home."

'You need to show me'

Devon had attended kindergarten and first grade at Mark Twain Elementary School. When his condition deteriorated, the Clarks moved him to St. Ann's Catholic School, in hopes the smaller class sizes would help. They did for a while, Alan Clark said, but at year's end, and after the flu shot, school officials said Devon would have to be evaluated by a psychologist before the start of the next school year.

The diagnosis of Asperger syndrome was made by a neuropsychologist in September 2003. The syndrome often is described as high-functioning autism, a condition that interferes with the development of the brain in areas of communication, thought processing and social contact.

For Lujene Clark, the diagnosis triggered the first of many overnight Internet research sessions. She said she was unfamiliar with the syndrome and shocked to learn it was linked to autism.

"It shocked me, because Devon had met or exceeded all his developmental milestones," she said. "The symptoms fit, and the diagnosis fit, but it was inconsistent with a child that had talked early and walked on his first birthday."

In her research, she found a study from the Massachusetts Institute of Technology in which hair samples from babies' first haircuts were being sought from children suffering from autism and related conditions, including AD/HD.

"We knew something had to have happened to move him further down the autism spectrum," Lujene Clark said. "It dawned on me that if they were checking hair samples, it had to be either pharmaceutical drugs or metals. I knew Devon hadn't had that kind of drugs, and I knew it couldn't be metals in our water because I know Carthage has good water. I would see the tests when I was on the council."

Clark, who was accustomed to research after four years on the Carthage City Council, said she then typed into the Google search site "heavy metal toxicity and autism" and found page after page of references that linked heavy metals to developmental problems. At first, she said, she thought lead was the culprit.

"I kept reading and realized they were talking about mercury, but I knew there was no way we would let Devon be exposed to that - we don't even keep a mercury thermometer in our house," she said. "Then I realized he had been exposed to it, and we held him down while it was injected into him."

She said her husband disputed her discovery after she woke him up at 3 a.m. to tell him what she had found.

"He said there was no way mercury could be in his vaccines, because everyone knows it's toxic," she said. "When I pulled up the references, he was just as horrified as I."

She said they both, at first, set out to prove there could be no connection between Devon's condition and the childhood vaccines and a flu inoculation he was given because of his asthma.

"The EPA (federal Environmental Protection Agency) tells you not to eat too much tuna because of the mercury," Lujene Clark said. "What we found out is that Devon's flu shot was the equivalent of 10 cans of tuna."

"We went on almost a 24-7 analysis, trying to figure it out," said Alan Clark.

"I kept doing the research, and then in November we went to a conference in Dallas where there were leading researchers who had written papers confirming the link," Lujene Clark said. "I asked to see their raw data because I know numbers can be manipulated. I said, 'I'm from Missouri and you need to show me,' and they did."

On the road

In addition to seeing the research, Clark said, she and her husband heard success stories from doctors and parents who reported that children's symptoms had improved after treatments including chelation to remove heavy metals from their systems. Chelation treatments can be done chemically or using saunas, to remove heavy metals via urine or sweating.

They also met Lyn Redwood, of Atlanta, Ga., founder of SafeMinds. She formed the group to lobby for the removal of thimerosal from vaccines after her son, Will, developed autism.

Lujene Clark said Redwood began researching a connection between autism and vaccines in 1999, when the American Academy of Pediatrics and the United States Public Health Service released a joint statement calling for the removal of the compound, which is 49.6 percent mercury, from vaccines.

Clark said Redwood also shared information she had researched, including some obtained under the Freedom of Information Act, showing that discussion of removing mercury from vaccines had started as early as seven years ago, under the FDA Modernization Act of 1997.

Redwood said SafeMinds was formed after she testified in July 2000 before the U.S. House Committee on Government Reform, urging that thimerosal be removed from infant vaccines.

She said that after her son developed autism, tests determined that his mercury level was 5 parts per million.

"EPA considers 5.9 parts per million toxic," she said. "We presented our information to the National Institutes of Health, Food and Drug Administration, and Centers for Disease Control."

Though an Institute of Medicine study released last May discounted any link between thimerosal and autism-spectrum diseases, a study by the state institute in October 2001 said that although data was inadequate, a link was "biologically plausible."

Redwood said SafeMinds questions the data used in the second study that discounted any connection. A representative of the organization was to testify Thursday in Washington in an attempt to get access to the raw data.

Redwood said her son, now in the fifth grade, has improved after a variety of treatments, including vitamins, minerals and chelation.

Since that conference in November in Dallas, the Clarks have continued to research. They have attended more conferences, and have met and corresponded with researchers, physicians and parents of autistic children.

Lujene Clark listed the destinations: Atlanta, to meet with the Redwoods and review their research; Tampa, Fla., to attend an EPA symposium on mercury; New Orleans, where both took DAN (Defeat Autism Now) training; Chicago, for an autism conference; Maryland, to meet with researchers; and South Carolina, for an American Academy of Environmental Medicine symposium on mercury.

She also ticked off, without a note in front of her, the research she said shows the link between mercury and autism, and the scientists who did the studies. She said the Clarks have met with researchers from institutions such as Columbia University, Northeastern University, Johns Hopkins, Baylor Medical College, the University of Washington and the University of Kentucky.

"We're in contact with about a dozen regularly, in addition to other parents," she said.

The Clarks have launched their own Web site - www.NoMercury.org - that has received more than 16,000 visits in the past eight months. The site includes copies of government documents and transcripts of congressional hearings.

"That's the great thing about government," Lujene Clark said. "They love to have meetings, and they love to take notes. Lots of times, they'll bring in a transcriptionist and take it down word for word."

The Clarks have lobbied in Jefferson City, Des Moines, Sacramento and Washington, D.C., on behalf of legislation that would either ban thimerosal from vaccines or require that a thimerosal-free version be available. Though both have worked on behalf of the legislation, Lujene Clark often goes by herself, if you don't count the nine file boxes of research papers she takes along.

She also has been featured on CBS News, worked with United Press International in an investigation of the issue, and was interviewed Friday by a Fox News affiliate in Kansas City.

Bill fails to reach vote

Missouri, this spring, would have been the first state in the United States to adopt legislation banning thimerosal from vaccines . The measure passed the Missouri House 152-4 and received the unanimous endorsement of a Senate committee. It failed to reach a Senate vote after it fell victim to a filibuster on the last day of the session.

The bill's sponsor, Rep. Roy Holand, R-Springfield, said the measure will be introduced again next session.

Holand, who is term-limited, said several physicians in the House have offered to be sponsors, and that state Sen. Norma Champion, of Springfield, will handle the bill in the Senate.

Holand, an orthopedic surgeon, said he sponsored the bill in an attempt to "resolve conflicting polices and information regarding the effect of mercury as a preservative in immunizations."

"It's been used for 50 years, but there's been an explosion of kids with autism and related diagnoses in the last 15 years, at the same time they have substantially increased the required number of childhood immunizations," he said.

As a result, by the time a child is 2, he could have received 15 to 20 injections containing mercury, Holand said.

"When you add them all up, we believe there can be toxic levels of mercury," he said.

He said the Clarks have been valuable allies for the legislation.

"They've become crusaders not only in Missouri, but across the U.S. They're making a difference for children, and they're making a difference in state and national health-care policy," he said.

Holand predicted that mercury-banning bills will be introduced next session in 15 or 20 other states.

Lujene Clark said she is hopeful Missouri's bill will pass next session, but she is disappointed that her home state was not the first to pass the legislation.

That happened May 14 in Iowa, and parents of autistic children there credit the Clarks for the bill's passage.

Lujene Clark testified on behalf of the legislation, Alan Clark appeared on radio shows with researchers and other parents, and Lujene Clark returned to Des Moines when the bill encountered last-minute opposition, said Dana Halverson, of Northwood, Iowa.

"We couldn't have done it without her," Halverson said. "She brought her research and flew up at a moment's notice. We have a lot of knowledgeable parents, but Lujene - we named her 'the queen of research.' We're in awe of all the information she's compiled. She and Alan make such an incredible team, with his background as a physician and her political knowledge."

Clark also lobbied for thimerosal-banning legislation in California. It was signed into law Sept. 29 by Gov. Arnold Schwarzenegger.

A national ban - H.R. 4169 - has been introduced by U.S. Reps. Dave Weldon, a Florida Republican who is a physician, and Carolyn Maloney, a Democrat from New York.

Another vocal supporter is U.S. Rep. Dan Burton, R-Ind., who attributes his own grandson's autism to a series of vaccines the child received.

Clark said 48 other congressmen have signed on, so far, as co-sponsors.

"But not one is from Missouri, even though we met personally with Roy Blunt and asked for his support," she said.

Blunt, R-Mo., did not return a call to the Globe seeking comment.

Seeing improvements

A year ago, Devon was taking six or seven medications a day as treatment for Asperger syndrome and asthma.

Today, his treatment includes a daily chelation treatment in an infrared sauna, a twice-weekly B-12 injection, and vitamins and minerals.

He uses his asthma inhaler only occasionally, compared with several times a day previously, Lujene Clark said.

He was found to be deficient in human growth hormone and received treatment for a time from Dr. Karen Porte, in Joplin.

"We think the sauna has unplugged the pathways, and he's producing his own hormones," Alan Clark said. "But we also know of children who aren't using a sauna that are doing great with the hormone."

Lujene Clark said the couple will spend between $35,000 and $50,000 this year on Devon's treatment. Insurance does not cover much, since the regimen is considered alternative medicine.

The Clarks also point to vastly improved scores on their son's work at school, Mark Twain Elementary, where he is in fourth grade.

Previously, "he'd be lucky to get 8 or 10" on a 49-point scale, "and he got a 49 on Wednesday and Thursday," said Lujene Clark.

And Devon, now age 9, will tell you he's feeling better.

"More like me," is how he describes it. He'll also tell you how he felt about Asperger's syndrome.

"I was mad, and I didn't like it," he said.

© 2004 The Joplin Globe Publishing Company