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12 girls in upstate New York developed "tourette like symptoms" all at the same time?

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  • 12 girls in upstate New York developed "tourette like symptoms" all at the same time?

    This was an interesting news article I heard about on the Today show.

    Mass hysteria behind girls' mysterious Tourette's-like symptoms: doctor - New York Daily News

    If you watch the video you just can't believe this is in her head. I was wondering what your thoughts are?

    ---------- Post added at 04:11 PM ---------- Previous post was at 11:07 AM ----------

    This is a better link to the story. It talks about how some boys in taiwan developed symptoms after an h1n1 vaccine in 2010. Just like my son.

    12 Teens Who Suddenly Developed Involuntary Tics Get Diagnosis: Conversion Disorder - Forbes

  • #2
    Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

    Interesting article(s) and I hope we might receive a commentary about conversion disorder from those can competently interpret that report.
    TouretteLinks Forum


    • #3
      Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

      Wikimedia Error

      Conversion disorder is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient's life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV).

      Formerly known as "hysteria", the disorder has arguably been known for millennia, though it came to greatest prominence at the end of the 19th century, when the neurologists Jean-Martin Charcot and Sigmund Freud and psychiatrist Pierre Janet focused their studies on the subject. The term "conversion" has its origins in Freud's doctrine that anxiety is "converted" into physical symptoms. Though previously thought to have vanished from the west in the 20th century, some research has suggested it is as common as ever.

      The DSM-IV classifies conversion disorder as a somatoform disorder.


      • #4
        Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

        I live about 45 minutes from LeRoy (the upstate NY town). While the state health dept is saying it is conversion disorder the families are not convinced. Erin Brockovich is now involved, as it has now come to light that there was a toxic spill/dump near the school in the 70s. My husband has the same symptoms and we are convinced he has conversion disorder, so we have been following this story since August.
        Last edited by Steve; January 30, 2012, 10:37 AM. Reason: add URL (sp)


        • #5
          Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

          I understand this is just a small part of this story but according to this: Erin Brockovich investigates mystery illness affecting N.Y. teens | MNN - Mother Nature Network one of the girls had been diagnosed with Tourette's four months after tics started. Does it happen often that Tourette's is diagnosed when symptoms have been present for less than a year?
          Mother of 2 boys - 8 year old with TS+


          • #6
            Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

            Hi Davispen,

            The TSFC has posted the symptoms of Tourette Syndrome listed in the DSM-IV on our web-site:
            • Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily in the same way;
            • The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year;
            • The periodic change in the number, frequency, type and location of the tics, disappear for weeks or months at a time; and
            • Onset before the age of 18.

            The diagnostic criteria are for the tics to be present for more than a year.

            Here's some video and a longer report from ABC News. (Caution: there's a very loud commercial at the end of the report.)

            I have never heard of Tourette symptoms this severe before:

            Lydia Parker, a senior at Le Roy High School, has symptoms so severe she spends most of the day in a wheelchair. "I can't stand for more than about two minutes," said 17-year-old Parker. "And my vocal and tic and everything gets really bad at night."
            I also find this statement interesting:

            The National Institutes of Health has offered to help solve the puzzle. Dr. Mark Hallett, chief of the NIH Medical Neurology Branch, said the cluster of cases offers a unique research opportunity.
            It will be interesting to see what the NIH has to say.
            Tina, Forum Moderator, TSFC Staff Liaison

            TSFC Homepage
            TSFC Membership


            • #7
              Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

              So if tics are bad enough even if they aren't present for a year it can be diagnosed as Tourette's? I am asking this as a personal question. My son has been diagnosed with "transient tics" but yet his psychiatrist sees it as him having Tourette's even though his tics only started this past September. I am guessing it is because his tics have such a wide range and are very apparent. I'm wondering if docs always need to go by the criteria?
              Mother of 2 boys - 8 year old with TS+


              • #8
                Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

                You might want to do some more reading on tic disorders. I would like to suggest another resource for you:

                Tigers, Too: Executive Functions/Speed of Processing/Memory
                Impact on academic behavioral, and social functioning of students with ADHD, Tourette Syndrome, and OCD
                Modifications and Interventions
                By Marilyn P. Dornbush and Sheryl K. Pruitt

                There’s a whole chapter on Tic Disorders (Chapter 2).
                Here’s a few details:
                • Large population-based studies indicate that up to 20% of students have tics at some time during childhood and adolescence.
                • Tic disorders lie on a continuum of symptomatology ranging from Transient Tic Disorder to Tourette Syndrome.

                I think your psychiatrist is walking the safe line and calling your son's condition "transient tics." He may suspect Tourette Syndrome
                because his tics have such a wide range and are very apparent
                but might not officially diagnose Tourette until he sees the symptoms for a year.

                However, if your son's tics are interfering with the classroom and he needs the official diagnosis of Tourette Syndrome to receive accommodations in the classroom, you might be able to push your psychiatrist for a diagnosis letter that the school will need to start an education plan for your son.
                Tina, Forum Moderator, TSFC Staff Liaison

                TSFC Homepage
                TSFC Membership


                • #9
                  Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

                  Mass Hysteria Rare, but Usually Seen in Girls
                  February 3, 2012

                  Fifteen teenage girls report a mysterious outbreak of spasms, tics and seizures in upstate New York. But tests find nothing physically wrong.

                  Scores of adults in Northern California report crawling skin sensations and other bizarre symptoms. Government doctors find no physical cause after an extensive study.

                  The conclusion by experts is that these are just the latest examples of what used to be called mass hysteria. Now known as conversion disorder, sufferers experience real, but psychologically triggered symptoms.

                  It's rare, but scores or even hundreds of outbreaks have been recorded through the decades around the world.
                  It's a diagnosis that's often reached after other causes are ruled out, and is usually traced to a stress-causing trigger. Individual cases are common, even the kind involving tics and other movement-related symptoms. On average, the National Institutes of Health gets reports of two such cases each week, said Dr. Mark Hallett, who heads the branch that fields those calls.

                  Outbreaks, however, are unusual. Most involve females, often teenagers. Why is not clear. Some think it has to do with the way girls are socialized to deal with stress. Others say that females are just more likely to seek medical help -- and thus appear in medical reports.

                  Symptoms seen in outbreaks vary, and cases have included blindness, headaches, nausea, paralysis and inability to speak. As in infectious disease outbreaks, they often seem to begin with one person who gets the symptoms and then it spreads to people she knows. Experts believe that these first "index" cases often are people who have symptoms caused by a physical illness, but subsequent cases are subconscious mimicry.

                  Recent examples include:
                  • In the fall of 2007, at least eight girls at a Roanoke, Va., high school developed strange twitching symptoms similar to those in upstate New York. The school district spent $30,000 to check the school, but investigators found no environmental cause.
                  • Earlier in 2007, a mysterious illness swept through a Catholic boarding school in Chalco, Mexico, causing 600 girls to suffer fever, nausea and buckling knees that left many unable to walk. Batteries of tests found no physical cause.
                  • In 2002, 10 teenage girls at a small, rural North Carolina high school had epileptic-like seizures and fainting. The school buildings were inspected, but nothing was found to explain the outbreak.

                  Allegations of fakery sometimes surface, but most experts believe these patients have real symptoms that they can't consciously control.

                  One thing they often have in common, is some kind of precipitating stress in their lives.

                  That was the case in Le Roy, N.Y., the site of the latest example of this disorder. Dr. Jennifer McVige, a pediatric neurologist based in nearby Batavia, has seen 10 of the teens. "All of the kids had something big that happened," like divorcing parents or some other upsetting situation, McVige said, declining to go into detail.

                  The Le Roy Central School District paid for an inspection of the school, checking for formaldehyde, carbon monoxide, carbon dioxide, molds, solvents and other volatile organic compounds and even lighting levels. No environmental cause for the cases was found.

                  But the belief that there must be a physical cause drew national news attention, and finally, California environmental activist Erin Brockovich. She wanted to investigate whether a 1970 derailed train carrying chemicals may have contaminated groundwater with trichloroethene, or TCE. State health officials say no TCE was found at the school, and on Wednesday they reported no sign of that chemical or other threatening contaminants in the school or village water supply.

                  The idea that it's a stress-induced psychological disorder has been hard for some of the girls and their parents to swallow. Some have appeared on national and international TV voicing that view.

                  On NBC's Today Show last month, senior Thera Sanchez told how her Tourette-like tics worsened to the point where she couldn't even attend class. She had some psychological counseling, which she says didn't resolve her condition. "I want an answer. A straight answer," she said on the show.

                  Doctors familiar with the girls' treatment say the continuing news coverage has slowed progress they were making. They have recommended that all the girls see therapists. But that's easier said than done. There's a shortage of pediatric psychologists in that part of the state, McVige said.

                  Experts elsewhere have looked on curiously at the Le Roy story. One piece of footage prompted laughter this week among a group of physicians. They were watching a BBC report on the cases, which showed one girl with a jerking arm that suddenly became very controlled as she applied eyeliner and then jerked around again when she was done.

                  "It's almost impossible to conceive of a true neurological disorder that can allow for that complexity of switching back and forth," said Dr. Jose Maldonado, chief of psychosomatic medicine at Stanford University, who mentioned the group's reaction. "It also looks very purposeful. I'm not saying she's making it up. I'm just saying that it doesn't look neurological."

                  The AP was unable to reach the girl or her mother.

                  McVige acknowledged the other doctors' reaction. She recalled one examination in which the tic in one girl's arm stopped when a doctor forcefully held it, but then the other arm started moving. That also is not something generally seen in neurological disorders.

                  She said the Le Roy outbreak, at its core, is no hoax. But "now I think there's an overlay of some of the girls trying to prove 'there's something wrong with me,'" she added.

                  Calls from the AP to three of the girls were not returned. Brockovich did not respond to an email request for an interview, either.

                  Last week, while those cases were in the news, government doctors coincidentally released a long-awaited report on their investigation into an illness known as Morgellons (mor-GELL-uns).

                  The condition is marked by some bizarre symptoms, including sores, crawling sensations on the skin and - perhaps worst of all -- mysterious fibers that the patients believe sprout from their skin. Anecdotal and media reports about cases six years ago led to a study by the Centers for Disease Control and Prevention.

                  The agency found no environmental or physical cause for the cases; tests showed the fibers came from fabric, like clothing or blankets. Psychological evaluations suggested conversion disorder, said a neurologist who worked on the study.

                  Some specialists argue it doesn't fit in that category. Some believe Morgellons is a form of psychosis. Others insist these patients are not psychotic, but suffer from a less severe kind of psychological disorder which isn't well understood yet.

                  Also, at least some of the Morgellons patients probably don't have a psychological problem at all, said Dr. J. Michael Bostwick, a psychiatrist at Mayo Clinic who has studied delusions of infestation.

                  It turned out one woman had itchy skin that was caused by high calcium levels that developed from parathyroid tumors.

                  In past outbreaks, the symptoms of conversion disorder have tended to disappear in a matter of weeks or a few months. In Le Roy, many of the cases appeared around the beginning of the school year and were improving, but about half of the girls got worse after the wave of media attention and disputes about the cause of the illness.

                  Indeed, McVige said she has stopped forwarding media requests to her patients.

                  Anxiety and suspicion are continuing, fueled by YouTube, Facebook and other social media that weren't prevalent in earlier outbreaks, observed Robert Bartholomew, a sociologist who has studied mass hysteria for many years.

                  "There is a good chance that symptoms could spread to other students and last for several more months -- even years," Bartholomew said in an email from New Zealand, where he teaches at a university.


                  • #10
                    Re: 12 girls in upstate New York developed "tourette like symptoms" all at the same t

                    New Diagnosis in Teen Tic Disorder: What Is PANDAS?
                    By Maia Szalavitz, Time Magazine
                    February 11, 2012

                    A doctor says the Le Roy teens' mysterious tic disorder may have been set off by strep infection.

                    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.