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Le Roy and Corinth, NY, USA: Unusual outbreak of Tourette-like symptoms in at least 22 people

Emily

Editor, Senior Moderator
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Found a little more information. All the students with these symptoms are girls. That would seem to me to be an important clue, but only a couple of media sources are reporting this.

http://www.13wham.com/news/local/story/leroy-students-tourette-like-symptoms/s2yNJLPEakuBd9l61NJdAg.cspx
LeRoy Schools Looking Into Mysterious Student Health Concerns
November 28, 2011
Reported by: Evan White

LeRoy, N.Y.--13WHAM News has learned that six female students in the LeRoy Central School District have developed symptoms similar to Tourette's Syndrome....

http://www.whec.com/news/stories/s2360017.shtml
LeRoy schools warn parents about health concerns

Posted at: 11/04/2011 10:03 PM | Updated at: 11/07/2011 7:23 PM
By: Berkeley Brean | WHEC.com
LeRoy schools warn parents about health concerns

[snip]
There is all kinds of talk going around the town. News 10NBC is told it involves six girls all most, if not all different ages. One person told us off camera that her friend has it and the doctor said it was stress-related. News 10NBC received a call from another relative who is concerned that it's connected to the HPV vaccine Gardasil.

The school district and the Genesee County Health Department won't comment on that
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

It would be important to know if the individuals had any communication with each other prior to becoming ill. If they had, there is a possibility of a "hysterical" outbreak of some sort. See the discussion at ProMED post Number: 20070720.2327 for more details as to why an all female outbreak may be more likely due to hysteria (the basic idea being that girls are more likely to talk to each other about health).

http://wbtai.com/LocalNews/tabid/11...-Schools-No-Further-Comment-on-Tourettes.aspx

Roy Schools: No Further Comment on "Tourette's"
Geoff Redick posted on November 28, 2011 14:06
The LeRoy Central School District and the New York State Health Department say there is no contagious threat to students, faculty or staff, after completing initial investigation into a strange case of "Tourette's-like symptoms" in several high school students.

snip

Now, the district's most recent statement confirms that there is no "evidence of infectious or environmental causes as the origin of the students’ neurological tics." State Health Department representative Jeff Hammond confirmed to WBTA News that this means there is no viable threat to other students or staff.

more at above link...
 
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Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

This quote from the WGRZ article in the first post says they ruled out hysteria:

"While a cause has not been found, they are confident that the conditions and symptoms the students are exhibiting are real and not a figment of imagination or power of suggestion."

Someone with the health department says that while some of the symptoms can be associated with stress in individual cases, this is the only 'outbreak' of this type known to be reported. It sounds like there will be no more details about this from the school district.

http://wbtai.com/LocalNews/tabid/115/articleType/ArticleView/articleId/1591/LeRoy-Schools-No-Further-Comment-on-Tourettes.aspx
LeRoy Schools: No Further Comment on "Tourette's"
Geoff Redick posted on November 28, 2011 14:06


I hope that whatever is causing the illnesses, the girls get the right testing and treatment. I wondered if they had testing for autoimmune disease.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

This also just happened last month at my nephew's High School here in Northern Indiana. Same Tourette-like symptoms as described with the The LeRoy Central School District students. At least 2 individuals exhibited these symptoms both nearly within the same time period. I believe there was a 3rd student involved but my brother was not able to contact the parents. Onset occurred in mid to late August and continued into September and October. Hospitalization was required, diagnostic testing including MRI, spinal tap, drug testing, psychological testing all results did not indicate any reason this should be occurring.

The shaking was so bad at times that he required a wheel chair and walker to get around. The neck and headaches were so bad at onset, doctors suspected a stroke but that was soon ruled out. Both students were/are otherwise healthy and active with no special medical conditions. Both cases involved some measure of memory loss. My nephew experienced some memory loss but his classmate could not remember immediate names of their family members. It wasn't until weeks later that my nephews parents found out about this other student that was in his class that had similar symptoms. It was a relief for them to at least know they were not alone. This was a traumatic experience for everyone involved because it came on within a matter of 24 hours, and with no explainable cause. In frustration, they have been trying to get a similar investigation into this but have gotten red tape due to privacy issues.

Please post. I can guarantee this New York "Outbreak" was not isolated. These parents need answers. I am sure there are others out there that are going through the same frustrations with this.

I have contacted my brother this evening via e-mail to inform him of this information. If anyone else is dealing with this and would like to contact me via Flu Trackers, feel free to do so.

Digger
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

The sudden onset, shaking, head and neck pain you describe, Digger, sound very much like symptoms the girl from Le Roy described in her interview.

In the comments after this article on the Le Roy outbreak, a pediatric neuroimmune disorder associated with strep infections called 'PANDAS' is discussed.

http://www.wgrz.com/comments/140966/37/LeRoy-Students-Exhibit-Tourette-Like-Symptoms

There is a comment posted below this radio interview on the Le Roy cases that is made by someone who identifies herself as a child neurologist who gives her name and contact information. She is wondering about PANDAS, also.

http://media.rochesterbuzz.com/a/48424158/outbreak-of-tourettes.htm

There's another specialist that I've hear about in other rare neuroimmune disorders, Dr. Josep Dalmau. I think he'd know about the latest antibody testing available.

Here is a recent article about him. (You'll need an account to read it, but it is free to join Medscape.)

http://www.medscape.com/viewarticle/731830

Digger has contact information for Dr. Dalmau in post #9 here:
 
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Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Emily, Thank you for the additional information.

I have forwarded links from your post / this website to those involved here locally.

Thank you for taking the time to post this information. If there is additional information that the local Indiana families wish to share here, I would suggest to register with Flu Trackers forum to establish a means for contact with others that may want to at least initiate private communication via your Flu Trackers user account.

If there are others out there that have encountered this "mystery illness" and would like to share (in an appropriate manner), please login and do so.

It may help in determining the scope of this problem and provide important information to help those conducting investigations figure out what is going on here.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

There is a flutracker post previously posted back on 2/21/2011 that describes these symptoms and a discovery of what was once thought to be a rare illness.

The name of the illness is Anti-NMDA receptor encephalitis. It is an auto immune condition that is caused by certain antibodies that trigger a resoponse in the patient. The response attacks certain tissues in the brain that causes the sudden onset of these very symptoms and also a range of others that include cognitive imparements.

Here is the link to the 2/21/2011 FT post discussing this illness along with references to press and media articles describing the same exact head scratching by parents and medical professionals until the condition is finally diagnosed.

http://www.flutrackers.com/forum/showthread.php?p=427331

Within that link, Emily also posted an CTV.ca article of describing the stories of two parents in Canada with children that suddenly fell ill with the above symptoms. It also describes the pathology through the final diagnosis and includes information on the treatments available. It should be noted that the CTV.ca article below, names the same Dr. Josef Dalmau who was responsible for doing the testing for the anti-bodies that ultimately diagnosed the condition. He diagnosed the first case of this illness 4 years ago.

Here is the link to the very informative CTV.ca article.

http://edmonton.ctv.ca/servlet/an/l...ncephalitis-110923/20110925/?hub=EdmontonHome

Again, credit goes to Emily. Thanks so much for the life changing information that you have provided in this forum.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Contact information for Dr. Josep Dalmau, M.D., Ph.D., including telephone and e-mail, as well as an overview of his research interests, techniques and summary can be found at the link below.

http://www.med.upenn.edu/ins/faculty/dalmau.htm
 
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Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Thanks for posting Dr. Dalmau's contact info and correct first name spelling, Digger. :oem It was late when I saw your post last night and also I was startled to see that there was another cluster of cases sounding so similar in Indiana.

Thanks also for the kind words, though all credit must go to the researchers/doctors, patients, families and journalists who get the word out about these autoimmune neurological disorders as quickly as possible.

My hope would be that these teens in Le Roy and Indiana have or will recover spontaneously, but if not they can consult or have their doctors consult with experts on the autoimmune possibilities. Timely treatment is being stressed for these diseases.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

New information on LeRoy Students with Neurological Tics

Possibly 14 students effected per parent interviews with MSNBC affiliate WHEC-TV.

updated 11/29/2011 9:15:41 AM ET

[Snip]
"Parents say the students affected are all young women, ranging from 12 to 17 years old. They say two of the six students haven't come back to school yet. One student hasn't come back because of seizures and the other is being home schooled because of all the publicity.

The Health Department says the investigation has not revealed evidence of infectious or environmental causes as the origin of the students' neurological tics.

The names of the six students have not been released to protect their privacy. And while the parents we spoke with say they believe there could be as many as 14 girls affected, The Health Department says no other students or faculty are at risk and no other cases have been reported."


Link to this story is below.

http://www.msnbc.msn.com/id/4547164...information-leroy-students-neurological-tics/
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

The link below is to a broadcast on a local Rochester, NY radio station that aired today talking about the subject thread.

Although, I do not appreciate the insensitive comments this radio show has made about the illness these children are experiencing, the local female personality in this broadcast shares with the audience her discussions with local parents that stated they were concerned that these children had actually been in the process of receiving courses the HPV vaccine.

As well, she states she was personally aware of another local previous, yet separate, case similar to this. She states that case involved an adverse reaction in a child to an administered dose of the 3 course HPV vaccination series.

Again, if you can filter out some of the insensitive comments, this may be a point of interest.

http://media.rochesterbuzz.com/a/49099504/update-on-leroy-tourettes-case-part-2.htm

If this is the case, this is not representive of what the CDC estimates the expected ratio of adverse HPV vaccine reactions should be. Again, there is hearsay involved in this broadcast, but I had seen similar comments to the news stories that were published, even in some of the links to those stories in the posts in this thread.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

In light of the public concern and public comments in Rochester, NY about this event at LeRoy, I present an interesting article that was recently published on 11/11/2011.

This concerns some recent findings on contamination of the Guardisil HPV Vaccine. Reading the posts above and then reading this seems eerily similar.

http://sanevax.org/contaminated-gar...s-contaminant-does-not-belong-in-the-vaccine/

If Anti-NMDA receptor encephalitis represents the immune systems response to a perceived cancer it has detected and responded to, could the rDNA contamination be provoking the immune system in reacting/overreacting to its presense? Especially if it is proved to have become inherent in previously healthy host cells that the host immune system is now attacking.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

The sad thing to me is that if this is a vaccine reaction, it's a vaccine for a disease that is entirely preventable.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

We need to keep the focus here on the children that are showing symptoms and suffering in LeRoy. While the symptoms of the cases from LeRoy may suggest Anti-NMDA receptor encephalitis, this needs to be substantiated by the local public health department.

Besides rumors reported in the radio program noted above, the health department has not indicated that these individuals were recently vaccinated for HPV, influenza, or something else. The link in post #13 above is an attack against HPV vaccine discussing the presence of an aluminum adjuvant and genetically engineered cells evidence by the presence of L1-specific DNA fragments in the Gardasil vaccine. The FDA states that L-1 DNA fragments are a necessary part of the vaccine manufacturing process and are not contaminants. (link)

HPV vaccinations are routinely conducted throughout New York and other states. Why would HPV vaccinations only cause a cluster of cases with Tourette-like symptoms in LeRoy and nowhere else in the US, especially when all 13 vaccine samples tested by Sanevax Inc. contained the HPV recombinant DNA? (link) Also, the CDC and FDA jointly cosponsor the Vaccine Adverse Event Reporting System (VAERS) where adverse effects to vaccinations are publicly reported. Data on these events (through October 11, 2011) available for download here. From an epidemiological perspective, the data do not support a conclusion that the illness of these children is a result of a Gardasil vaccination.

Until more information is presented by public health officials it is premature to attribute the illness among these children and young adults to vaccinations.
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

At least from what the aunt of one of the girls said on the latest Buzz radio show, (thanks for finding the update, Digger), the girls in Le Roy are seeing a neurologist in Buffalo whom they like. It sounds like there was some delay in getting to that point, so I hope things turn out OK for them.

The possibility of 14 cases put forth in the MSNBC article fits with what I read on a forum. The poster was from the area and had heard that the count was 9-10 at that time. (On Nov. 9th.)

As Laidback Al pointed out, we have no idea here what could be going on. I better clarify something that Digger brought up, (this confused me a lot when I first read about anti-NMDAR encephalitis):

If Anti-NMDA receptor encephalitis represents the immune systems response to a perceived cancer it has detected...

So far anti-NMDA receptor encephalitis is only rarely connected to cancer. Dr. Dalmau's background was in neurological manifestations of cancer, so that can be confusing, (and alarming), to see highlighted in his biography. (I think some of the online biographies have nothing mentioned about his latest work so it looks like he is strictly a cancer specialist.)

They don't know why people get it. The only recommendations I have read about are timely testing and treatment. That seems to help the outcome, but the disorder is fairly rare and only recently recognized.

I have no idea if this outbreak is autoimmune at all. Thank goodness that is the job of of specialists to sort through that.
 
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Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

If it is 6 cases, the fact that they are all female could be due to coincidence. If it is 14, that has to be a clue and cannot be coincidence. To what might high school girls be exposed that boys wouldn't be? Perfume? Makeup? The girls locker room? Certain medicines?

It is unlikely to be simply contact among the girls as the girls would likely also have contact with many males (siblings, boyfriends, fathers, etc.).
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Assuming that there is approximately an equal number of boys and girls in the potentially affected population, even six girls and zero boys having contracted this condition is statistically significant regarding its gender occurence. Assuming equal numbers of boys and girls and a total population of 400, for example, if 14 girls show symptoms and no boys do, the probability is above the 96th percentile that there is a gender bias in whatever is causing this.

If it is 6 cases, the fact that they are all female could be due to coincidence. If it is 14, that has to be a clue and cannot be coincidence. To what might high school girls be exposed that boys wouldn't be? Perfume? Makeup? The girls locker room? Certain medicines?

It is unlikely to be simply contact among the girls as the girls would likely also have contact with many males (siblings, boyfriends, fathers, etc.).
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School



http://rms.medhyg.ch/article_p.php?ID_ARTICLE=RMS_247_0925

we don't know what happen ( need more informations ) juste note that there is sex ratio for NDMA encephalitis ( I don't know for the other forms of autoimmune disease of the brain )


automatic translation :
NMDA Encephalitis (N-methyl-D-aspartate)

This damage affects mainly young women and may be of paraneoplastic paraneoplastic or not.
In a recent review, more than 90% of patients are women with an age ranging from 5 to 76 years.18 The first description for women with a teratoma ovarien.19 Today, there is evidence that only 59% of patients positive for anti-NMDA have a tumor associated. The removal of the tumor or immunotherapy provides good recovery of symptoms despite a severe clinical picture.
Children may also be affected, according to a study récente.20, 21for The majority of patients, the initial symptoms are psychosis or other psychiatric symptoms (agitation, anxiety, etc.., 77%). Epileptic seizures occur in 76% of cases.Abnormal movements like dyskinesia, choreoathetosis, dystonia are present in 86% of cases. There is also autonomic instability in 69% of cases. A case of opsoclonus-myoclonus was successfully treated a patient for 23 years.22

The EEG is abnormal in almost all patients. The MRI showed hyperintensities in FLAIR or T2 in 60% of cases at the medial temporal lobe of the basal ganglia and cerebral cortex. In 40% of cases, MRI is normal. A recent observation by our group, through functional imaging, suggests a hypermetabolism in the basal ganglia, which correlates with the course of the disease and probably represents the counterpart of movements anormaux.23 The CSF is abnormal in 95% of cases with the presence of oligoclonal bands in 26 of 39 patients tested (66%). The clinical course can be dramatic, require resuscitation facilities and prolonged hospitalizations. The median duration of hospitalization was 2.5 months (one to fourteen months). Immunological therapies early (before four months of evolution) seem to lead to a better prognosis. It is the same for a tumoral origin. If the tumor is diagnosed and treated, recovery may be complete or persistent mild deficits.
All major components of immunotherapy (corticosteroids, immunoglobulin, and plasmapheresis) is used without being able to define a single or combination therapy as the most effective for all patients. It is reported one to three relapses in five patients, mainly in the absence of tumor with a median of eighteen months (and up to 84 months after the first attack) .18
 
Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 6 students at Junior-Senior High School

Bizarre mystery illness strikes group of N.Y. teens

<?xml:namespace prefix = fb /><fb:like width="125" href="http://video.foxnews.com/v/1389015047001/bizarre-mystery-illness-strikes-group-of-ny-teens/?playlist_id=87937" layout="button_count" show_faces="false" action="recommend"></fb:like>Jan 13, 2012
- 4:00 -
12 girls exhibit Tourette-like symptoms

Video:
http://video.foxnews.com/v/1389015047001/bizarre-mystery-illness-strikes-group-of-ny-teens/
<NOSCRIPT></NOSCRIPT>
 
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