In early 2012 the story of fifteen sick children in the same
high school in Le Roy, New York, hit the media, which labeled this rash of
symptoms as a “mystery illness.” Of course, doctors were described as “baffled”.
Over a short period of time the teens started to exhibit involuntary movements
and vocalizations described as tics, similar to the symptoms of Tourette
syndrome…
Chiropractor Russell Caram speculated that:
The other possibility here are HPV vaccines, Gardasil and
Cervarix. The timing becomes more easily explained—as most children “get their
shots” (and boosters, such as DTaP and the flu shot) before enrolling in school
in the fall. It also satisfies the girls-only attack (even though they’re
trying to convince boys to get the Gardasil shot also), as well as the age
group.
Caram’s hypothesis suffers from more than the fact that it
is pure speculation. Half of the children affected by the illness did not even
receive the Gardasil or Cervarix vaccines, nor is there any evidence to suggest
that either vaccine can cause such neurological symptoms in the first place…
Apparently, some of the parents of the affected children
called upon famous activist Erin Brockovich, who sent her team to investigate.
She has speculated about “. . . whether students have been exposed to
contaminants from the train derailment that occurred within a few miles of the
school in December 1970. That derailment spilled cyanide crystals and leaked
carbon tetrachloride”
.
Of course, an environmental toxin such as carbon
tetrachloride would not explain the timeline of the illness or its predilection
for girls. Why would a forty-year-old spill suddenly have an adverse effect on
people living in the general area? The results of a search for environmental
toxins in the area have already turned up negative, and the students themselves
have tested negative for toxic exposure. However, this poses the problem of
proving a negative. Brockovich claims that the search has not been thorough
enough, but such a claim can be made arbitrarily without limit.
Rosario Trifiletti, MD, PhD, is an expert in a rare
condition known as PANDAS (pediatric autoimmune neuropsychiatric disorder
associated with streptococcal infection), and she (sic)has come forward to claim
that this is what these children have. I
cannot get into a thorough evaluation of this complex condition, but suffice to
say that Trifiletti, who claims to be personally treating some of its patients,
is a major promoter of this diagnosis. There is a tendency to see what we know,
and experts in a narrow illness often see their pet disease everywhere. The
National Institute of Mental Health’s (NIMH) definition of PANDAS does not seem
to fit this case well. Age of onset for PANDAS is supposed to be between three
and puberty, but the Le Roy children are between the ages of twelve and
eighteen. There is no indication that PANDAS is a selective illness, affecting
girls more than boys. Furthermore, PANDAS is a clinical diagnosis without
laboratory confirmation; part of that clinical diagnosis is that symptoms are
triggered by a streptococcal infection (such as strep throat), which does not
appear to be the case here. PANDAS also involves more than tics—it can include
mood changes and obsessive compulsive symptoms, too. Altogether, based on
publicly available information, PANDAS does not seem a great fit for answering
the question of this “mystery illness.”
The “mystery illness” has become a Rorschach test of sorts:
people see in the illness a diagnosis that fits their worldview or pet cause.
But now that the dust has settled somewhat on this outbreak, what can we
reliably say about it? To review the facts of the case, eventually fifteen
children were affected with involuntary tics, which are sudden “jerk-like”
motor movements, between October 2011 and January 2012. All fifteen of the
children attend the same junior-senior high school and range in age from twelve
to eighteen; all but one of them is female. All of the children have been
examined by pediatric neurologists—twelve of the fifteen at the Dent
Neurological Institute by the same two neurologists, including Laszlo
Mechtler, MD.
Mechtler—and, in fact, all of the pediatric neurologists who
have examined any of the children—has come to the diagnosis of conversion
disorder and mass psychogenic illness…
It is important to note that this is a known and
well-established syndrome. Neurologists see patients with conversion disorder
frequently, and many cases positively demonstrate that the neurological
symptoms are not due to any damage or lesion in the nervous system but rather
to psychological stress. For example, it can be demonstrated in someone with
psychogenic blindness that their visual system actually works. Similarly, many
patients with psychogenic seizures display features that are neuro-anatomically
incompatible with actual seizures.
It is always challenging to deal with conversion disorder.
We medical professionals try very hard to accurately and constructively convey
to patients and their families what is happening, but unfortunately our culture
attaches an undeserved stigma to psychological ailments, and many patients
resist such a diagnosis. We tend to focus on the positive—psychogenic symptoms
can completely cure themselves (and usually do with encouragement and
reassurance to the patient) because there is no irreversible damage to the
nervous system.
The diagnosis of psychogenic illness, however, is also
partly a diagnosis of exclusion. It is often the case that a physical ailment
underlies the psychogenic symptoms and has, in fact, triggered them. The
diagnosis, therefore, is usually made only after a thorough workup to rule out
other causes…
In the case of the children in Le Roy, doctors report that
they have thoroughly evaluated the children—including screening them for any
toxins, infections, or signs of a physical illness—with completely negative
results. The school has been examined also, and no environmental toxins or
chemicals have been discovered.
Here we are probably dealing with not only a psychogenic
illness but also a case of mass psychogenic illness, which is also a known
phenomenon that can even be induced experimentally. In cases of mass
psychogenic illness, the appearance of symptoms in other people, which causes
anxiety about a contagious illness or a toxic exposure, can be the stressful
trigger. In susceptible individuals this can induce a psychogenic illness that
mimics the symptoms of those already affected. Media coverage only enhances
this phenomenon; in fact, some speculate that social media increased the spread
of the Le Roy children’s illness.
http://www.csicop.org/si/show/the_non-mysterious_mass_illness_in_le_roy_new_york
Numerous individuals, including officials of the Monroe County and New York State Departments of Health, attorneys, antivaccination cultists, and others whose speculation ran from useful to outright delusional[sentence lacking here]. Many individuals who “diagnosed” the teens without actually ever meeting them (proper diagnosis of neurodevelopment disorders requires one on one assessment, not the famous “let’s diagnose medicine over the internet).
ReplyDeleteFirst up, Erin Brockovich, yes THAT Erin Brockovich, decided to get involved in the story in early 2012. Now, it made some sense, since there was potential environmental disaster, because there had been a train wreck nearby in the early 1970’s which spilled toxic chemicals. However, it appears that Brockovich never really found anything and was blamed, partially, for contributing to the hysteria.
By April 2012, the EPA found nothing:
…the EPA has tested the groundwater around the high school, and it shows no contaminants including tricholoroethylene (TCE) that was spilled from a 1970′s train derailment nearby. Whatever the cause of the symptoms are, it is probably not pollutants…
Then Dr. Rosario Trifiletti made an internet diagnosis of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), apparently by analyzing some laboratory data without actually meeting and reviewing medical records of the LeRoy teens. He presented his diagnosis on the Dr. Drew show, not in a peer-reviewed publication–I don’t even put “explaining your scientific data on the Dr. Drew show” anywhere on the hierarchy of scientific evidence, but it’s probably right at the level of Natural News. A few journals have rapid communications which would have allowed him to rapidly present newsworthy data, so there’s no excuse to not have done this properly. Others, like Dr. Susan Swedo, who is the branch chief of pediatrics and developmental neuropsychiatry at the National Institute on Mental Health, are skeptical of Trifiletti’s diagnosis:
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.)
Furthermore, a recent review of research in PANDAS came to this conclusion: “Despite continued research in the field, the relationship between GAS (group A streptococci) and specific neuropsychiatric disorders (PANDAS) remains elusive. It is possible that GAS infection may be but one of the many stressors that can exacerbate tic/Tourette’s or OCD in a subset of such patients.” In other words, PANDAS remains controversial, and is certainly not backed by any sort of scientific consensus, so using it to “diagnose” these teenagers from afar is rather absurd…(continued)
(continued)One of the best analyses, by Ronald Pies, M.D., stated that “my colleague and CNN mental health expert, Dr. Charles Raison, recently reviewed this story in a thoughtful commentary. He concluded—quite reasonably—that ‘conversion disorder is a plausible explanation for the tics, verbal outbursts, and apparent seizures afflicting this group of 12 or more adolescent females.” Dr. Pies also makes a thoughtful analysis of the diagnosis of conversion disorder, which explains “what it is”, but fails miserably at explaining “why” or what causes it.
ReplyDeletePies further observed that, “whatever the ultimate cause or causes of conversion, it seems clear that this condition does not represent “malingering” or an attempt to deceive others. Unfortunately, individuals diagnosed with conversion symptoms are often written off as “crocks” or “fakers” and denied a thorough medical evaluation.”
Parsimony would lead us to conclude that the simplest diagnosis is the best, which, in this case, is conversion disorder. Whenever something like this cluster occurs, many individuals attempt to invent a complex diagnosis, sometimes to further their own causes. As frustrating as it might be, conversion disorder may make sense, and that will help these individuals get the appropriate psychological and psychiatric help.
Dr. Pies also stated that:
Whatever the ultimate cause or causes of conversion, it seems clear that this condition does not represent “malingering” or an attempt to deceive others. Unfortunately, individuals diagnosed with conversion symptoms are often written off as “crocks” or “fakers” and denied a thorough medical evaluation. For some patients with apparent conversion symptoms, “hysteria” is indeed the last diagnosis they are likely to receive. In time, we may discover a number of distinct causes for the symptoms experienced by the LeRoy students, varying from person to person. For now, we need to keep an open mind about whatever is afflicting these young people, and treat them with respect, understanding, and patience…
Dr. Jennifer McVige, a pediatric neurologist, who has been treating most of the LeRoy students, said “four of her 12 patients are symptom-free and another four or five are nearly at that point.” Dr. McVige and the state Department of Health agree on a diagnosis of mass psychogenic illness for the Le Roy students. It is a psychological disorder, similar to conversion disorder, linked to stress in the patients’ lives. It was not PANDAS, environmental problems, vaccines, or alien visitations.
http://www.skepticalraptor.com/skepticalraptorblog.php/update-leroy-ny-teenagers-mystery-neurological-illnesses/
The PANDAS/PANS Institute[Dr. Rosario Trifiletti]
ReplyDeleteThe purpose of this site is to promote the development of a PANDAS/PANS Institute aimed at clinical research, basic research and clinical care/treatment of this important and common disorder. After treating over 2000 patients suffering form PANDAS/PANS, it has become apparent that there needs to be more research.
As a physician and researcher, I have over 20 years in academic and hospital-based practice in the NYC area. In order to better concentrate on treating PANDAS/PANS patients, several years ago I opened a full-time private practice. Sometimes, you've just got to do things yourself. I am committed to providing each patient with an exceptional level of care and attention, as every child is precious and deserving of every chance to shine according to their abilities. Personalized treatments and care are often the only way to help those severely affected by PANDAS/PANS.
As a parent, you may be nervous. This is understandable; this is your child's brain we are talking about here. I will make every effort to put you at ease with a thorough explanation of the diagnosis and treatment plan. Appointments are scheduled so that there is plenty of time for questions. I believe that a treatment is optimally effective only when parent(s) and (where possible) patient understand why the treatment is being given and what the alternatives to not treating are. We are conveniently located in Ramsey, NJ, directly across from the Interstate Shopping Center. We offer extended hours on weekdays, offer Saturday hours, and accept same-day appointments (based on availability).
Although I am a general child neurologist, I have special interest and expertise in PANDAS/PANS.
Contact us for an appointment. We sincerely appreciate the opportunity to help your child.
http://www.pandasinstitute.org/