Community Wants Answers About Mysterious Outbreak

First appeared in USA Today

Beth Miller says her 16-year-old daughter — who is among the teens afflicted with facial tics and verbal outbursts in a mysterious outbreak in Le Roy, N.Y. — was better for a while but is now "worse." And that's why Miller and others are hoping environmental activist Erin Brockovich can provide some answers that others haven't.

"My sister-in-law contacted her first and said 'Something's not right here.' Then we contacted her as well and thought if both of us contact her, maybe she'll answer," Miller said Thursday. A week ago, the neurologist treating most of the 12 girls with the same symptoms said that medical disorders, diseases and environmental factors had been ruled out, leading him to a stress-related diagnosis called conversion disorder. Three additional teens, including one boy, are now reported to have similar symptoms.

"We contacted her to see if she thought it could be an environmental problem," says Don Miller, who has raised stepdaughter Katie Krautwurst, the youngest of their five kids, since age 1.

He says they haven't been satisfied with the environmental testing done so far. "They did the bare minimum."

Brockovich says she has heard from many in the community and around the country, all wondering about the possibility of an environmental cause. She's sending an engineer to to do a site assessment and meet with families this weekend.

"He's prepared to take soil samples and water samples," she says. "We'd like to do soil vapor testing but can't because the ground is frozen and we won't get a true result."

The Le Roy Central School District, in a statement posted on its website, says medical and environmental investigations have uncovered no evidence that would link neurological symptoms "to anything in the environment or of an infectious nature." Superintendent Kim Cox, in an e-mail Thursday, said, "There will be no further comment at this time."

But Brockovich points to a well-documented chemical spill more than 40 years ago within 3 miles of the high school, which opened in the fall of 2003. She speculates contaminated soil may have been used in the school construction.

The spill was on Dec. 6, 1970, after a train derailment. A report by the U.S. Environmental Protection Agency said 1 ton of cyanide crystals spilled to the ground, along with 35,000 gallons of an industrial solvent called trichloroethene, also known as trichloroethylene, or TCE.

The cyanide crystals were removed and "neutralizers were spread on the ground to counteract the effects of any remaining cyanide," the EPA report, written in 1999, says.

However the liquid TCE, was absorbed into the ground. Residents later reported smelling the chemical, which has a distinctive sweet odor, in local well water. Testing between 1990 and 1994 found 50 contaminated wells in the area, the EPA says. Residents received filtering systems for their water.

The site was placed on the Superfund National Priorities List in 1999.

"Everyone around in the '70s knew about the spill," says Don Miller, who says he and his wife grew up in Le Roy.

As a young teen, he says, he was among those who helped clean up bottles and other debris at the site, though not chemicals, he adds. He now works as a dispatcher for a trucking company.

A report written in 1997 by the New York State Department of Health, together with the Agency for Toxic Substances and Disease Registry (ATSDR) says that early in 1971, people living next to the spill site "complained of solvent-like odors in their drinking water," which came from wells, the only source of water in the area.

A report issued in 2006 by the National Academy of Sciences on the effects of exposure to trichloroethylene found that inhalation of TCE can cause "neurotoxic effects in laboratory animals and humans." One of those is a change in the "masseter reflex latency," or jaw jerk reflex. Whether that is in any way similar to the facial tics the girls are exhibiting is unclear.

Though the girls' symptoms have been described as "Tourette's-like," John Walkup, chair of the medical advisory board of the National Tourette Syndrome Association, says to his knowledge there's been no connection between Tourette's and exposure to TCE.

The National Academy of Sciences report also noted that "drinking water contaminated with small amounts of TCE over a length of time may cause liver and kidney damage, impaired immune system function and possibly birth defects," the Academy report said. The EPA has concluded that TCE is highly likely to produce cancer in humans.

The National Institutes of Health in Bethesda, Md., has said that any of the affected students can be tested as part of an ongoing study of conversion disorder, characterized by problems with voluntary motor or sensory function that suggest a neurological condition but aren't consistent with known biological causes.

In more than one person, conversion disorder is called "mass psychogenic illness," said neurologist Laszlo Mechtler of the Dent Neurologic Institute in Buffalo, who made the determination.