By Melissa Ross First Coast News
PONTE VEDRA BEACH, FL -- Madison Rolfsen, 7, greets visitors to her home with an unself-conscious wave, a gap-toothed smile, a soft-spoken "Hi." Her large blue eyes peek shyly upward at the adults in the room. She seems to blend in with the other kids in her upscale Ponte Vedra Beach neighborhood. And that is a miraculous turn of events for her mother.
"When you look at her now, you can hardly tell she was diagnosed along the autism spectrum," says Jennie Rolfsen. The diagnosis was first rendered at age 3, just a few months after Madison, who had been sick, tried to "catch up" during a visit to the pediatrician by receiving some scheduled vaccinations she had missed. "She got nine shots on the same day," says Jennie. Hib, Hep, MMR, DTaP, I can't even remember them all."
All of Madison's shots contained the mercury-laced preservative, thimerosal. At the time, Jennie says, she did not even know what thimerosal was. But this mother vividly remembers the days and weeks after that visit to the doctor. "We got home, and she slept for more than 24 hours straight. It was like a zombie sleep. That worried me much more than her high fever. I just could not wake her up." "Then, three days later, she was gone." She pauses. "She was just gone." Madison, says her mother, quickly began to lose skills, words she had learned. The little girl's personality appeared to change almost overnight, from that of a bubbly, energetic, outgoing child to "a kid completely withdrawn into her own world." "We had lost her."
A specialist diagnosed pervasive developmental disorder, one of several diagnoses along what's known as the autism spectrum. P.D.D. children present autistic symptoms, but are not considered to be as severely regressed as those with classic autism.
As Madison languished, the Rolfsens began scouring the Internet for answers. Specialists in autism-related disorders eventually confirmed their fears. Madison, they were told, suffered heavy metal toxicity from the thimerosal-containing vaccines she received, which they believe inflicted neurological damage. "We immediately began to research treatment options," she says, "beginning with a wheat- and dairy-free diet, special supplements, and lots of behavioral therapy." The treatments have had some positive effect. While Madison still struggles, Rolfsen says her daughter has made huge strides in the four years since she was diagnosed. "She's just doing so great now. We want her to go to college, and work, and just do whatever she wants to do."
Vaccine manufacturers began removing thimerosal from childhood vaccines beginning in 1999, due in part to worries the potent preservative, which is used to prevent decontamination and which is 49.6% mercury by weight, might have been contributing to rising rates of autism and developmental disorders. 37 Jacksonville families are currently petitioning the U.S. Court of Federal Claims for compensation because they believe their childrens' autistic symptoms stem from thimerosal.
The concern, says Florida Congressman and physician David Weldon, centers on the fact that the number of vaccinations mandated for children sharply increased during the 1990's. Weldon has joined the chorus of those who believe the increased mercury load damaged some children.
However, others believe parents and researchers have mistakenly made the thimerosal-autism connection because many children were diagnosed with the disorder at around the same time that they tended to receive clusters of vaccines.
But although thimerosal is now out of most vaccines, Weldon has recently introduced legislation calling for a complete ban on the preservative, a measure that could affect this year's supply of flu vaccine. The majority of flu shots contain 25 micrograms of thimerosal, although a preservative-free version of the flu jab is available. "That's why I'm introducing this legislation now," he told First Coast News. "This is one of the most toxic substances on the planet, and I want to make sure no thimerosal-containing flu shots are given this year. Because anyone who would knowingly inject a little baby with mercury-loaded vaccines is irresponsible. "I would consider that malpractice."
The debate over thimerosal's potential role in autism - now believed to affect around 1 in 160 American children - is fierce. Studies on the issue that directly contradict each other fly through cyberspace and are hotly debated at medical conferences, like a recent Institute of Medicine panel on the topic held in February of 2004 in Washington, D.C.
At the IOM panel, researchers presented evidence both supporting and rejecting the theory that thimerosal has played a role in rising autism rates. Dr. Mark Geier and his researcher son, David, were two of the featured speakers. Using information from the Centers for Disease Control's own Vaccine Safety Datalink, the Geiers say they found evidence that children who received thimerosal-containing shots were six times more likely to become autistic than those that didn't. "It's the worst mistake that was ever made in the history of medicine," says Geier. Geier also points out, in addition to the flu shot, some non-routine vaccinations, like DT, still contain thimerosal. He supports Weldon's push for a ban.
But the Centers for Disease Control tells First Coast News the concerns are overblown, and says the Geiers' research, along with other studies supporting their position, are not credible. Furthermore, the Geiers are no longer being allowed to access the CDC's vaccine database, because the CDC claims the Geiers did not follow proper privacy procedures. Says Steve Cochi, acting director of the CDC's National Immunization Program, "The studies showing a potential link have not been subjected to sufficient peer review. They have not been replicated."
This, despite the First Coast News I-Team's confirmation back in February, that the CDC knew as far back as 2000 that thimerosal might be harmful. An internal study conducted by the CDC was discussed in June of that year at a secret meeting in Simpsonwood, Georgia, featuring representatives from the CDC, the FDA, and the vaccine industry. During the meeting, the participants went over disturbing study results about thimerosal and expressed alarm. In the minutes, one pediatrician goes so far as to say, "I don't want my grandson to get a vaccine with thimerosal until we know what's going on here."
But the CDC went on to release a study in the November 2003 issue of "Pediatrics" clearing thimerosal of any link to neurological problems in children. Cochi says the Simpsonwood meeting's minutes, eventually released through the Freedom of Information Act, offer no proof thimerosal has the potential to harm. He adds, "It is far more critical that we immunize everyone against influenza, which is a serious threat, than endanger the supply of vaccine over a theoretical risk." He says the CDC does not plan to recommend mercury-free flu shots over the traditional thimerosal-containing ones.
Meantime, the CDC has already begun stockpiling flu vaccines, both with and without thimerosal, to safeguard against possible shortages such as those the country saw last year. And Cochi says if Weldon's legislation passes, a mandate of only mercury-free flu shots could squeeze an already tight supply.
As for Weldon's implication that the CDC is, in effect, guilty of medical malpractice by recommending mercury-laced flu shots - "Well, any politician can champion a cause," says Cochi, "whether it is based on fact, or whether it is not based on fact. And one must consider the consequences of unfounded fear." Rubbish, says Weldon. "Mercury-free flu shots cost about $4 more per dose. That's about the cost of a Happy Meal."
As the debate rages, parents of autistic children are becoming ever more aggressive in their search for effective treatments. Jennie Rolfsen joined thousands of other parents this March at the Defeat Autism Now! conference in Washington, D.C., a symposium featuring the nation's leading experts on biomedical treatments for autism-related disorders.
"Every time I go, I learn something new," she says. "Every year Madison gets better." She envisions Madison's future at age 25, 30, and beyond, and the tears well up. "I just hope she's walking down the aisle somewhere!"
"I pray to God," she says. "I pray to God."