The mystery deepens. A New Jersey neurologist has reported that he reviewed blood tests on eight of the upstate New York teens who are suffering from a strange tic disorder — which has affected 18 people since last fall — and diagnosed them with a condition called PANDAS.
PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections — used to describe a subset of children who have obsessive compulsive disorder (OCD) and/or tic disorders like Tourette’s and whose symptoms develop after infection with strep. Typically, kids have a sudden onset of symptoms following strep infection. PANDAS is thought to be caused by an auto-immune response to infection (strep is not the only bacteria or virus that can cause it).
The new diagnosis, which was made by Dr. Rosario Trifiletti on Dr. Drew’s show on HLN Monday night, runs counter to the diagnosis by New York state health officials, who say the teens have mass psychogenic illness.
In a statement on his diagnosis, Trifiletti said that based on lab tests he reviewed, there was “evidence of carriage of Streptococcus pyogenes” in five of eight girls, and that “seven of eight show evidence of infection with Mycoplasma pneumonia.” He concluded:
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.”
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. “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,” Swedo says.
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). “Tics increase in times of stress and decrease during rest for most people,” she says, “though sometimes the opposite occurs.”
The Le Roy teens are known to have suffered significant stress in their lives. According to Dr. Lazlo Mechtler, the doctor who has been leading their treatment, at times the girls’ stress has been “everything you could imagine and worse,” including bullying that preceded the onset of the symptoms.
Trifeletti is now using antibiotics to treat the girls he’s seen, the standard course of treatment in cases of PANDAS caused by strep. Swedo concurs that the “best treatment for PANDAS is to treat the inciting infection if it’s still present — with antibiotics if strep is the cause.”
Mechtler, for his part, was not pleased about the sudden interference by Dr. Drew and Trifiletti, who did not consult him. He told the local news site The Batavian that if the antibiotics work, it would be a good thing — but most likely due to the placebo effect.
He also said that media “hysteria” was exacerbating the problem. “The [teens] who are not appearing on TV are getting better. The ones who are on TV are getting worse or staying the same,” he told a reporter.