The doctors have tried to tell her every way they know how over the past three months: delicately, constantly, even urgently. But as Heather Parker sips coffee in her weathered clapboard house, she still isn’t buying that the Tourette’s-like twitches that have consumed her 17-year-old daughter, Lydia, since she woke up from an October nap are a product of a psychological disorder, not a physical one.
Says Parker about her daughter Lydia.
“I just can’t make sense of it, it’s just so obvious that something is really wrong in her body.”
Parker, a single mother with a ponytail and glasses who’s lived all her life around Le Roy, a town of 7,500 near Rochester, where, before a slew of teenage girls started reporting such tics, the only attraction of note was the Jell-O museum. Beside her sits Lydia, an unhappy-looking girl with coal-black dyed hair whose right arm swings like an orchestra conductor’s every five seconds or so. Lydia, a senior, hasn’t been in school since the tics started. She’s supposed to be going to her tutor, but often she can’t get herself out of bed, so now she may have to drop out and get a GED. Says her mother.
“She was going to be the first person in the family to finish high school, but because of what’s happened to her health, that doesn’t look good now.”
When the girls—there are more than 20 of them now, with four new cases last week alone—started reporting similar symptoms, it didn’t take long for the TV cameras to descend. Since January, there have been dozens of crews crowding the counter at places like Java’s on Main, the local coffee shop, clutching tripods and cappuccinos, hoping for footage of the girls and their parents. In the past few weeks, producers fromGood Morning America, The Today Show, Anderson Cooper 360° and HLN's Dr. Drew (see below) have swooped in, offering anxious moms a chance to go on air with their daughters, to beg for answers.
There have been several theories as to what is causing this mysterious illness which is affecting the teens of Le Roy, N.Y.
- Toxins from hydraulic fracturing (“fracking”) in the natural-gas wells that ring the girls’ school.
- On January 28, 2012, Erin Brockovich, the environmental crusader, appeared on HLN's Dr Drew, and believes that a 1971 train derailment that spilled one ton of cyanide and 45,000 gallons of Trichloroethylene (TCE) only four miles from Le Roy High School is the cause of the mysterious illness. Ms Brokovich has made a career out of investigating and litigating toxic spills, recently sent a trusted aide to the scene to dig up soil samples from the school grounds, there was reason to suspect a cover-up.
- On February 6, 2012, Dr. Rosario Trifiletti , a New Jersey neurologist reported on HLN's Dr. Drew that he reviewed blood tests on eight of the upstate Le Roy, New York teens who are suffering from a strange tic disorder — which has affected 18 girls and one boy since last fall — and diagnosed them with Pediatric Autoimmune Illness Associated with Streptococci or PANDAS.
- Some folks on the Internet believe that vaccinations like Gardasil could be the source of the mysterious illness.
But amid the soundbites from contentious public meetings and the bustle of production assistants ushering red-eyed mothers to the makeup chair lies a very inconvenient truth: the cluster in Le Roy is, by all reasonable judgment, a mass hallucination. Aided by media of all sorts, what the girls are suffering from is perhaps the ultimate disease of our era.
Over the past months, even as health officials have methodically ruled out organic causes, the cases have stubbornly spread through this working-class community. Laszlo Mechtler, from the Dent Neurologic Institute, a leading neurologist in the area, at the request of the National Institute of Health, is investigating the mysterious illness for confirmation of PANDAS, and Dr. Mechtler has had 18 of the girls in his office says.
“It’s a very hard thing for parents, for people in general, to accept.”
Leaning forward in a leather chair at the end of a long day, he says that he and a female colleague recognized as soon as the girls started streaming into their office that they had “conversion disorder,” named because the mind unconsciously “converts” emotional disturbances into physical symptoms. In addition to the girls, one woman in her 30s and a teenage boy have also developed symptoms.
“This is nothing that people want to hear.”
Next door, in an examining room, a colleague is talking to yet another girl who tics uncontrollably as her mother stands by in horror. While as many as 15 percent of the people who come to him turn out to be suffering from a conversion disorder, “mass psychogenic illness,” as he refers to the cluster in Le Roy, is rare. When it does strike, it is almost always confined to groups of girls, often in rural areas. During the early 20th century it struck all-female factories; before that, nunneries, according to Timothy F. Jones, an epidemiologist who began studying the phenomenon after a similar outbreak in a high school in Tennessee in 1998. Mechtler says.
“This isn’t a sexist observation. It’s just a fact. These girls in this case are under an enormous amount of stress, and that has surfaced in this difficult way. The attention, the cameras, all the social media, it has made things much worse.”
Heather Parker doesn’t get all the talk about stress. She says
“Lydia didn’t even have a test in school the next day."
In fact, things had been looking up ever since 2009, when Parker had finally gotten up the nerve to kick out the kids’ father, who has done time for assaulting his daughter. That was a bad stretch, she acknowledges, but not as bad as what happened to another girl, whose mother had discovered that her boyfriend was secretly filming her daughter undressing in her bedroom. When the mother confronted him, the guy blew his head off, right in front of the girl and her mother. Mechtler says.
“The more you ask these kids about their lives, the more you find out. But if you ask them if there are stressors in their life they have no idea what you’re talking about.”
Treatment for conversion disorders includes therapy and medication for depression and anxiety. Some of the girls are already recovering, he says,
“The ones who’ve stayed off TV, whose parents are keeping them off Facebook.”
Some parents have persuaded Erin Brockovich to send an associate back to Le Roy on Feb. 20 (Brockovich did not respond to requests for comment). And Dr. Rosario Trifiletti, who has made a name for himself diagnosing PANDAS, is convinced the blood samples from some of the girls show that they have “triggers” for the disease. Dr. Tifiletti says.
"All eight girls tested show evidence of infection with at least one of these pathogens. Both of these agents have been associated with a PANDAS-like illness with the sudden onset of motor and vocal tics. Thus, a PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder."
Although Trifiletti conceded that much about the disorder remains unknown, he said:
“I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply the straw that broke the camel’s back.”
About 40% to 60% of childhood tic disorders are believed to be initiated by infections, but the exact numbers aren’t known due to lack of research.
However, the report by the New York State Department of Health released at the end of January states flatly:
“None of the cases meet the PANDAS criteria.”
Furthermore, Laszlo Mechtler, from the Dent Neurologic Institute, the leading PANDAS expert from the National Institute of Mental Health said that’s unlikely, given that PANDAS is exceedingly rare and has never occurred in clusters like that in Le Roy, N.Y. Nonetheless, Trifiletti, who last week was on Nightline, is treating the girls with antibiotics. He did not return calls for comment. Mechtler says.
“It’s ridiculous, but maybe this will give some of the girls a way to get better without shame.”
There are many reasons for skepticism. Dr. Susan Swedo, branch chief of pediatrics and developmental neuropsychiatry at the National Institute on Mental Health, who is responsible for having named PANDAS, says she has not “personally evaluated any of the teens in Le Roy, so would not be able to determine if they have PANDAS or not,” but notes discrepancies between what is known about the Le Roy, N.Y., cases and about PANDAS.
For one thing, PANDAS doesn’t usually occur in clusters. Indeed, Swedo says that she is “not aware” of any epidemics of PANDAS ever occurring. The last epidemic of illness following strep infections — a cluster of rheumatic fever, which is an inflammatory disorder — happened in the 1980s. (Both PANDAS and rheumatic fever are caused by overzealous immune responses to infections; immune cells mistakenly attack particular organs or tissues, in addition to the infectious agents.)
Another red flag: strep is extremely common and PANDAS is very rare. Only about 1 in 100 children have OCD or tic disorders — and they aren’t all caused by infections. In contrast, Swedo notes, “In some school-aged children, positive titers [for strep] are found in 60% to 70% of kids at this time of year.”
Further, the fact that virtually only females have been affected by the tic disorder in Le Roy weighs against a PANDAS diagnosis. Swedo says.
“Tic disorders, like childhood-onset OCD, are about three times as common in boys as girls, so if you had a ‘tic epidemic,’ one would expect to see 40 to 60 boys, if 14 girls were affected.”
Consistent with the prevailing diagnosis of psychogenic origin, Swedo notes that tic disorders may worsen in the presence of stress (regardless of what caused the tics in the first place). She says.
“Tics increase in times of stress and decrease during rest for most people, though sometimes the opposite occurs.”
As for Lana Parker, she disregards the talk of PANDAS. She and her daughter have accepted that the condition will remain a mystery, at least to them. For now, Lydia is on disability and Medicaid. Parker says.
“Overall I’m really proud of the way she’s handling it.”
On Main Street, the townspeople seem to be wearying of the whole affair. They tolerated the media when things looked dire, “and we certainly got a lot of extra business with all the crews,” says Melissa Lytle, who works behind the counter at Java’s on Main. But as the environmental fears subside and the cases keep mounting, tempers are starting to fray. At the back table of the coffee shop, a clutch of older men working the crossword together regard with obvious disdain a Swedish producer flipping madly through a local phonebook in search of girls who’ll go on air. “If they’d just go away, maybe this would all pass,” says one of the men in a fierce whisper.
At the Living Waters Church, as a light snow begins to fall, a worker emerges to silently slide the letters off the marquee out front. In minutes the prayer for the girls is gone. In its place: “Le Roy: Still a Great Place to Live.”
COMMENTARY: Whatever is causing the mysterious tic illness that has now afflicted 20 high school students in Le Roy, N.Y., appears to be localized in Le Roy, N.Y. This is good news for the medical profession.
However, there appears to be broad differences of opinion as to what is really the cause of this mystery illness. Hopefully, the medical profession and health institutions will come together compare results, and conduct more conclusive research into the illness.
I am inclined to believe that it is not mass hysteria or mass psychogenic illness, but a combination of the effects of environmental toxins stemming from the railroad derailment that released the cyanide and TCE into the ground, contaminated soil used in the construction of Le Roy High School, and PANDAS. These toxins could've weakened the autoimmune systems of the young victims enough to allow a Strep infection to trigger PANDAS. That's just my theory. Dr. Toy has said his peace.