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Over the weekend Erin Brockovich made the news yet again as she and her nonprofit team descended on the village of Le Roy, N.Y., determined to test for environmental toxins that might be giving the town's teenagers symptoms of Tourette's syndrome. She has reportedly been stonewalled thus far by local officials, who have already ruled out toxins as the cause of last October's sudden outbreak of tics and involuntary movements in 12 girls who attend Le Roy Junior–Senior High School. An environmental testing company surveyed the air and water and found nothing amiss, and a local neurologist concluded upon examining the girls that they had "conversion disorder," a catchall moniker for physical symptoms that originate in the mind because of stress, trauma or even mass hysteria.
But many of the affected kids, their parents, concerned locals and outside experts are unhappy with that diagnosis, especially as the number of teens with symptoms has risen to 15 in recent weeks. Some experts think the doctors should revisit the idea that the teenagers might have PANS—pediatric acute-onset neuropsychiatric syndrome.
PANS is a new name for an old idea: that infections by bacteria, viruses or parasites can cause the sudden onset of neuropsychiatric ailments such as Tourette's and obsessive-compulsive disorder (OCD). (Tic disorders like Tourette's are closely related to OCD, sharing many symptoms and often coexisting in patients.) PANS is more commonly known by its former name, PANDAS—pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection—because the first known cases were in kids who had strep throat and then suddenly developed OCD. But researchers have realized in recent years that a variety of infectious agents—not just strep—can cause mental illness.
New Jersey–based doctor Rosario Trifiletti, who specializes in PANS, visited Le Roy, about 50 kilometers southeast of Rochester, last weekend to take blood and tissue samples from some of the afflicted girls, so he can test for such an infection. The results of those tests will be ready in a couple weeks. In the meantime, OCD expert Michael Jenike, a professor of psychiatry at Harvard Medical School, explains what PANS is and why it might account for the mysterious illness in Le Roy.
[An edited transcript of the interview follows.]
What is PANDAS, and why is it now called PANS?
It's the sudden onset of a neuropsychiatric disorder: OCD, anorexia or psychosis, cognitive problems. Initially, PANDAS was associated with strep. It turns out that other infections like mycoplasma, certain viruses, Lyme disease—these also produce the same thing. So it's not necessarily associated with strep, and they changed the name to reflect that. Now it's any sudden-onset neuropsychiatric disease.
I've even seen it in old people after they have mono, they suddenly have OCD. I've seen a lot of it after Lyme disease now, too.
How can an infection cause a mental illness?
It's an autoimmune issue. Mady Hornig at Columbia University has a mouse model that shows how it works. They give strep to mice, then give them another agent that breaks down the blood–brain barrier, and that induces a neuropsychiatric syndrome: the mice have trouble running mazes, and so on. Then they purify the antibodies from those mice, inject them in another mouse that never had strep, and that mouse gets the neuropsychiatric symptoms, too. That shows it's the antibodies doing the damage.
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Add CommentI was wondering if anybody would know if the patients have had MIR scans? I am wondering if these tics could be a symptom of damage to the brain caused by mobile phone radiation? The fact that it seems to be confined (mostly) to females might be explained by the fact that they would tend to spend more time on their phones than the average teenage male. (It's not meant to be sexist.)
Reply | Report Abuse | Link to thisSorry, MRI scans.
Reply | Report Abuse | Link to thisHi NomadicView,
Reply | Report Abuse | Link to thisI understand (per TV interviews with the Dent physicians) that at least some of the girls had MRI's. If this is indeed PANDAS/PANS or Sydenham's Chorea the MRI's would be normal.
There may be hormonal reasons why mostly girls are symptomatic. For example, Sydenham's Chorea (which is a close cousin of PANDAS/PANS) is known to be more common in females.
Please check if they are taking some drugs like Oral contraceptive pills or Amphetamine.
Reply | Report Abuse | Link to thisI'm glad there are several people who are insisting on an independent and thorough investigation. There are several types of toxins and chemicals that could cause these symptoms. For accurate information about the health effects of indoor contaminants, check out the Global Indoor Health Network at http://globalindoorhealthnetwork.com.
Reply | Report Abuse | Link to thisThere has been some speculation that an environmental toxin might be present in the Girls Softball Field. That could account for the fact that it has been mainly girls they've found so far. When they get the most recent blood tests back they may be able to add a few more kids to the affected list. The school as a whole has a much higher rate of learning disabilities than other public schools in the United States. It's possible that many of these kids are not twitching but are dealing with learning disabilities brought on by PANS.
Reply | Report Abuse | Link to thisDoes PANS normally only affect girls? If not (and even if so) - perhaps the fact that it is only girls contracting it might give a clue to what might be causing the outbreak.
Reply | Report Abuse | Link to thisIf it is because genetically only girls can get it- is it linked to hormones that are in girls bodies but not boys? Could something be causing an imbalance in the natural hormones?
What about cultural/environmental- is there some cultural activity all these girls have in common? A common birth control pill- (or a shared PE locker room?- a tap in the girls bathroom they've all drunk from?)
Have any of the girls been hanging out with Tituba or Goody Osborne?
Reply | Report Abuse | Link to thislol I was surprised that noone cried witch earlier
Reply | Report Abuse | Link to thisThis sounds a lot like Chronic Fatigue Syndrome, which over 25 yrs ago, was labeled mass hysteria/conversion disorder. Only difference is, they're actually doing something about this outbreak, where as millions of CFS sufferers are still stigmatized with this dark ages diagnosis!
Reply | Report Abuse | Link to thisThis is a conversion reaction, and these gals are getting exactly the secondary gain to exhort their behavior. Laying odds that this is conscious, and the game will eventually be laid bare.
Reply | Report Abuse | Link to thisOf course a full and independent investigation is necessary to check out the weirder causes just in case, but proving a negative is very difficult.
While there seem to be many possible answers to this problem, I cannot help but wonder whether the five natural gas wells, which involve the use of toxic chemicals to be fracked, have any connection. It is a puzzle that only the girls are affected. I am wondering whether there might be migration of chemicals into the drinking water where only the girls use a fountain or whether the air in the girls' bathroom or locker room might be affected. In Texas there was a case of illnesses where the girls' playing fields were close to hydrofracking. I believe this was Flower Mound. In any event, the reluctance of town or school authorities to question the gas wells seems questionable to me. Among other health effects, neurological effects are sometimes caused by some of the chemicals, as reported in "Split Estate," documenting this industrial activity in Colorado.
Reply | Report Abuse | Link to thisSounds like Sydenham's chorea (historically referred to as Saint Vitus Dance)"characterized by rapid, uncoordinated jerking movements affecting primarily the face, feet and hands. Sydenham's chorea (SC) results from childhood infection with Group A beta-hemolytic Streptococci and is reported to occur in 20-30% of patients with acute rheumatic fever (ARF). The disease is usually latent, occurring up to 6 months after the acute infection. Sydenham's Chorea is more common in females than males and most patients are children, below 18 years of age." [From Wiki]
Reply | Report Abuse | Link to thisAlso sounds like ergotism, but do they grow rye in upstate New York?
Soil from the 1970 TCE spill was transported and dumped into an abandon quarry. Locals assert that when the new high school was built in 2008 that contaminated soil was used as fill. The soil has not yet been tested. The Brochovich people were prevented from taking soil samples. The EPA took samples from the original spill site and what do you know - they found TCE - DA!!! EPA did not sample the soil around the school. It looks liked a coverup.
Reply | Report Abuse | Link to thisSoil from the 1970 TCE spill was transported and dumped into an abandon quarry. Locals assert that when the new high school was built in 2008 that contaminated soil was used as fill. The soil has not yet been tested. The Brochovich people were prevented from taking soil samples. The EPA took samples from the original spill site and what do you know - they found TCE - DA!!! EPA did not sample the soil around the school. It looks liked a coverup.
Reply | Report Abuse | Link to thisThen why is it clustering like this and hasn't affect the 90% or so of Americans who also use cell phones? Surely these 15 girls are not the top 15 cell phone users in the world.
Reply | Report Abuse | Link to thisThe school only tested the air and water INSIDE the building. The issue is groundwater contamination resulting in toxins on the school grounds, in particular the girls' softball fields. The school has flooding issues, is near agricultural runoff as well as the superfund site with rusted barrels from the cleanup of TCE/cyanide, and reportedly there are natural gas wells on school site which may involve fracking; there are 6 natural gas wells on school grounds. Documents show that last year, a month and a half before the first girl became symptomatic, they were cited for two of those wells spewing toxic brine onto the ground, killing trees and vegetation around them. This is right on the fields where students have played sports every day.The school attorneys refuse to provide the press with documents about the chemical content of the "brine."
Reply | Report Abuse | Link to thisHow often do we hear there's little or no risk associated with toxic events? San Onofre nuclear plant "might have released some radiation" and after it was claimed that there was no risk it was discovered that some pipes had abnormal wear. Our infrastructure can't last forever but the call not to panic will last until the creators of coverup stories are held responsible.
Reply | Report Abuse | Link to thisHi,
Reply | Report Abuse | Link to thisI don't know if the author is reading the comments but I am curious as to whether there are any documented cases of PANS being spread through blood transfusions. In the mouse experiment moving antibodies from one mouse to another produced symptoms. Could human transfusions produce the same results?
Two years ago, my then 18 year old son began experiencing what looked like seizures, along with arm flapping/jerking. The onset was swift and he experienced these episodes several times in a minute. So much so that he was unable to function. Initially when we took him to the ER they diagnosed him with seizures. Once they did an EEG, they determine they were not and they told me he had Tourettes. I didn't believe that was what it was and I began my on quest to find out what was going on. I read about PANDAS and took the information to my son's neurologist. He said that my son couldn't have that because he was too old. (18) Because none of the medications they had given my son were helping after months of suffering, I demanded they do blood work to rule out any strep infection to see if it was PANDAS. They did and I got a call saying that my sons antibody load for strep was extremely high, which indicated he had either had strep or been exposed. I work with children and about one month prior to my son getting sick, 2 of the children I work with had strep. I believe based on my research that I was a carrier and my son was exposed to it that way or that he had an undiagnosed case around that time. Unfortunately, the pediatric neurologist was still not convinced. He put my son on a one week course of antibiotics because I was instant that he take this seriously. It didn't do much to help, probably because so much time had passed from the original onset and the damage was done. To this day, my son is on clonodine and clonazapam to help keep these neurological episodes under control. I am so glad that they have changed the name to PANS and I hope doctors take this seriously as it most definitely is not limited to young children. I hope these girls get the help they need.
Reply | Report Abuse | Link to thisThese diffrent outbreaks are probably associated witht the type of food we are eating and modern lifestyle detterents.
Reply | Report Abuse | Link to thisIt's psychological. I saw a video of one of the girls doing her "tics". Her right arm and hand were making geometrical-like ("squarish") motions which are not the same as tics. It's like a hysterical hemiplegia in which the sensory defect stops precisely at the midline rather than overlapping a little bit. One has a supposedly neurological finding which is pseudo-neurological.
Reply | Report Abuse | Link to thisPANDAS (or PANS) makes perfect sense. It doesn't affect only girls. My son has been afflicted with it since he was 11. Doctors are leary about acknowledging that that this even exists. We were told over and over it's stress, genetic, etc... but I have enough documentation on his cycles of symptoms vs treatments with an antibiotic that there's no doubt that in his case strep cauase OCD and tics so severe that he can barely function. He's never showed typical symptoms, i.e., high fever, sore throat and many quick strep tests came back negative, but a strep titer test (bloodwork) would show that he had strep.
Reply | Report Abuse | Link to thisWe finally got him on a prophylactic antibiotic about 1.5 years ago (for acne) and he's been symptom free since.
This definitely could explain what happened there, but still unusual that so many people would be affected that way in such a small area.
Yes, this does remind me of the so called 'CFS' outbreaks in the 1980's. I live in Buffalo NY and in the fall of 1988 I went to LeRoy NY from Buffalo with my husband we spent the whole day there, ate there, but Amish baked goods and produce, and had a late picnic on the grass. The year 1988 was THE HOTTEST YEAR ON RECORD, until the year 2011 that is. The weather both years was the same as was the heat index and rain fall. After I returned from LeRoy myself and my husband came down with some severe and bazaar out of the blue neurological symptoms similar to the women in Corinth NY. Later we were diagnosed with Chronic Fatigue Syndrome even though we NEVER said we were tired, NEVER..That DENT neurology was a fraud shit-hole way back then, and I see it's still of garbage diagnoses like it was back then. The problem in this area is that when you go to a doctor here you are battling a mob. If you don't like your diagnosis TOUGH SHIT, 'cause nobody is going to help you or go against someone else's in WNY states diagnosis. It's like fighting city hall, NO WORSE.. These Dent doctors are going to call every favour they have out there to get others in the medical field to substantiate their bogus 'conversion disorder' idea, and they are going to make sure that nobody out there is willing to stick their neck out to come to another conclusion. That's why it took a doctor to come from New Jersey regarding diagnosing PANDAS, rather than anyone dare step forward in Western New York. It's a real mob mentality here in WNY and that's a good part of the reason why are healthcare system here is probably the worst in the country. Finally, I'd like to make sure anyone reading this knows that I do not go to ANY doctors anymore. It's a waste of time if you live in WNY because they are all functioning under the same 'cover-up' mob mentality.
Reply | Report Abuse | Link to thiswell i think such infection can infect any one of any age
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Reply | Report Abuse | Link to thisWhy just these kids and not everyone? Because people respond differently to toxins or pathogens. Recall that many people get the flu, but only a small percentage of them die from it.
Reply | Report Abuse | Link to thisOne guy watched a video and made a diagnosis that they are all faking. Regular Marcus Welby there.
Could be PANS, or just as likely contaminated siol or groundwater from 'fracking'. Sounds a heck of a lot more likely that 'conversion disorder'.
"Conversion Disorder"? Sounds like code for 'we don't know what it is, we are tired of trying to figure it out, embarassed by our ignorance and impotence and it is easier to blame the victims, now please go away'.
It sounds much more like Syndenhams Chorea to me. I watched the videos of those afflicted and many of their tics are almost identical to my sisters who has Tourettes syndrome. I am glad that someone is looking into PANS but Syndenhams actually makes more sense. It explains why it is mostly girls who got it and why some of them have seen improvement in their symptoms (can spontaneously resolve after around 2 months). I worry that the blood tests won't really be effective in the case of Syndenhams since it can start 9 months after an infection when blood titers would have returned to normal. I know people will argue that Syndenhams and PANS don't occurr in groups like this but both can be caused by numerous different illness, many of which like STREP can be asymptomatic and go untreated or unreported and move rapidly through schools. Additionally many of these illness are constantly evolving and mutating so it is possible they had a version that is more likely to lead to Syndenhams or PANS.
Reply | Report Abuse | Link to thisI'm going to answer some questions up in here. I am a 17 YO male and I had PANDAS as a kid, of course we didn't know it was PANDAS then, it was just a phase. I grew out of PANDAS and the antibodies stopped affecting me how they used to and I gradually got batter from my symptoms. My family didn't realize what was happened to me until my older sister at the age of 16 began to start having tics. She was then diagnosed with conversion disorder and many docs who got their degrees out of cereal boxes even had the nerve to tell her that she was faking it. Anywhere my sister went to find help doctors pumped her full of new medications because they got paid by the drug companies. It wasn't until that we found a doctor who specialized in PANDAS that she started getting better. @NomadicView I have heard this theory before, This is not possible for my sister who hardly ever uses her phone and I know plenty other people with PANDAS who have never even owned a phone of their own. @David N'Gog Girls aren't the only people that get this seeing how I have had it myself and there are other gentlemen around the world who have gotten PANDAS, but the idea that they got it from water fountains is possible because PANDAS is started after becoming infected with a contagious disease. It is possible that one girl at the school got it; touched something in a girl’s area at the school and that is why only girls at the school are getting it. And @NomadicView My sister has received over 6 MRI scans of while she is awake, asleep, twitching, and not twitching. I am not too sure about the results but I will find out and get back to you on that. It must not have been anything significant though because my sister is still twitching, but after the studies done on my family, we were able to find a way to take care of these girls and through the outreach that my older sister did to the Leroy girls and other kids with PANDAS, the disorder is becoming less unknown and treatments and cures are being discovered. I hope I may have been some help. and if you have any questions you can email me at alex@egyud.com, I am also currently writing a paper on PANDAS for my science exit project.
Reply | Report Abuse | Link to thisIt could be contraception, as they're at that age where they start to take contraception. One that the girls are taking and it's having an effect on their body that wouldn't happen with older women.
Reply | Report Abuse | Link to thisTo be honest, it could be a number of things, the best thing they can do is find out a commonatility of what all the girls hold in common, it could be a toilette or medicine or food or drink, etc. Which i'm surprised no one has seemed to have done yet :s
jimbob, i have chronic fatigue syndrome, it doesn't manifest like that.
Reply | Report Abuse | Link to thisHi, I was wondering whether you have tried combined antibiotic therapy for your son. They use quite a few different antibiotics including azithromycin, changing antibiotics every couple of weeks. Polymerase chain reaction testing for Mycoplasma infection may also be helpful, as this doesn't show up with ordinary blood tests, with the bacteria actually hiding in the immune cells.I have read that it is the combination of different antibiotics that is important for successful treatment. All the best.
Reply | Report Abuse | Link to thisHi, I was wondering whether you have tried combined antibiotic therapy for your son. They use quite a few different antibiotics including azithromycin, changing antibiotics every couple of weeks. Polymerase chain reaction testing for Mycoplasma infection may also be helpful, as this doesn't show up with ordinary blood tests, with the bacteria actually hiding in the immune cells.I have read that it is the combination of different antibiotics that is important for successful treatment. All the best.
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