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

[cpinsr]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Before I share our similar story with my son, I?d like to really commend these girls on their courage in coming forward. My thoughts and prayers go out to them and their families. Also, I will start by telling you that our story has a good ending with 100% recovery.

My son, 9 at the time, started his symptoms in November of 2010 (a little over a year ago). The symptoms started 2 weeks after his Flu shot (actually he got the nasal mist). I remain suspicious that this was the instigator in our case, but we never were able to confirm it. I wonder if the girls in NY had Flu shots possibly from the same source around the same time? Would make sense given they all started their symptoms in October (Flu shot season).

What started out we though was viral (cough, stridor) morphed several times during the course of his illness. Most disturbing were the acute chest pains which were seemingly random and twitch-like and then came the near complete paralysis of his legs. Over the period of three weeks we were in and out of ER visits and tested everything. After all tested clear, the diagnosis turned to conversion disorder. I did a lot of reading on this and had a hard time dismissing organic causes. A top Pediatric Neurologist @ UCSF saw my son and ruled out things like Guillain-Barre syndrome, but also let me know that there had been some strange reactions reported with regard to the Flu shot ? so I still remain suspicious of this. What I also found is that conversion disorders are often triggered by organic causes. So it?s NOT an either/or.

Once it was clear that after all the tests that there was no apparent imminent life threatening known cause, we started to treat this as if it was a conversion reaction. There was really no harm in pursuing this treatment path and there was no logical reason to dismiss this as a possiblity. A big clue for me throughout this scary ordeal was that when he slept, the symptoms went away (no chest pain surges, legs moved when nudged, etc.) . At that point I felt there was enough to signal this had a mind/body neurological component when he was conscious. So we started a combination of pediatric physical therapy and Cognitive Behavioral Therapy (CBT). I wonder if these twitches for the girls in NY subside during their sleep?

At any rate, the first order of business in CBT was to take the spotlight of the symptoms ? treating the symptoms in a more nonchalant ? even normal daily life - way. This was an unnatural act, but after two weeks ? with the spotlight off of all the doctor visits, extreme parental attention and concern, etc. etc.. I can tell you that it started working. It took about four months to go from hints of leg movement (toes), to kneeling, to crutches, etc.. He is now he is 110% and doing fantastic.

In summary, my belief is our situation started with the Flu shot or some strange virus, but then morphed into a conversion reaction probably due to the trauma, stress, and fear of the ER visits. I believe it was all nervous system and neurological and the most effective treatment we pursued was CBT therapy (which also required changes in OUR behavior and OUR reaction to his surges). We did not pursue any medications other than pain killers which didn't seem to help by the way.

I hope our story helps. I?m happy to clarify any points or answer any questions in attempt to help these girls in NY and others.

[jeffrey]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Just a quick question from the affected group. Since the last poster put Flu Vaccine as a possibility. I was wondering if any of the Girls at Giardisal Vaccine?
I know that it would be ruled out immediately, but just wondering.
Also, it would be interesting to see if any of the girls or affected parties got any type of vaccine?
Thank you and I hope this was ok to ask?

[alert]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

UPDATE AND CLARIFICATION: The mention of types of drugs above wasn't meant to exclude from the meaning, as it does, that designer drugs weren't investigated as a cause. They were and subsequently ruled out as a cause. PANDAS has been ruled out as a cause. HPV vaccine has also been ruled out as a cause, according to Dr. Young. ODD or ADHD can make a child more susceptible to tics, but that isn't a cause. One thing Young intimated is that there is no one cause for all the girls.

That was post #24. Gardisil is the HPV vaccine, and it has been ruled out. The illness in post #46 is significantly different than that reported in the rest of this thread, with a respiratory component and paralysis.

[cpinsr]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Yes and no to Post #48. Watching the girls on TV my wife and I saw very similar components to what we experienced with our son - hence my reply. Our son's symptoms began to morph during the course of his illness both in location and severity. In the end, the doctors believed it all seemed from neurological and/or psychosomatic origins. We suspect what triggered it all was his reaction to the Flu shot or something viral. Also during the whole course there were no signs of infection - fever or otherwise.

Hope that helps.

[sharon sanders]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Thank you everyone for participating.

In the future, please post all personal stories to this thread in the discussion forum:

http://www.flutrackers.com/forum/showthread.php?p=437597#post437597

This is a news only thread.


Thanks!

[Giuseppe]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

An overview of Tourette's Syndrome is available at Oliver Sacks blog (http://www.oliversacks.com/2011/05/27/tourettesville/ ). Sacks' neurologist experience with patients with this syndrome may help many to understand better this condition and its causes.

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

One Addtional Case Came Forward from Corinth, NY

Alycia Nicholson also has been ill with the tics and seizures since May 2011. The problems are still ongoing for both Corinth Girls.

"When you look at all the symptoms there's something very dark, it's bigger than that" says Nicholson’s father Randy.

The two girls play softball together. Nicholson started having symptoms in May, Brownell in August. Both experience twitching that turns into body convulsions.

"There is something actually happening to their bodies, something I believe is coming from the outside, the environment somehow" adds Nicholson.

The (2) Indiana cases left our local Indiana school on a bus for a band trip to New York City on the early evening of March 20, 2011, I do know they were in Central Park on 3/22/2011.

Read more: http://www.cbs6albany.com/articles/s...#ixzz1kFKdZP4a

[alert]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

That pretty much clears both the restaurant and the unidentified sporting event, which took place in July, since one of the Corinth cases was already ill. It also probably clears person-to-person contact because Alycia was ill in May, before any of the LeRoy cases, and did not have contact with any of them (there is no evidence she travelled with her teammate, as she was already ill).

I do notice, in addition to all the New York case being female, that an unusually high proportion of them are involved in outdoor sports. This thread contains mention that several in LeRoy play soccer together, at least one is a cheerleader, and the two in Corinth play softball. The question is, what exposures might outdoor sports produce (and why havent, for example, the entire football team been sickened)?

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Alert,

In reply to your post #53 above,

I do notice, in addition to all the New York case being female, that an unusually high proportion of them are involved in outdoor sports. This thread contains mention that several in LeRoy play soccer together, at least one is a cheerleader, and the two in Corinth play softball. The question is, what exposures might outdoor sports produce (and why havent, for example, the entire football team been sickened)?

I believe you are correct. The (2) Indiana cases were both in the High School band. I also noticed a photo showing Thera Sanchez was in Flags during the Today show interview. Many of these activities are "camped" prior to and after the school closing for the summer break. Band practice for the (2) Indiana cases began weeks before the school opening. The school facilities are used for activities throughout the summer and as you stated, they involve being outdoors for extended periods of time.

Just to clarify, I don't think the focus should be on the school as being the cause(fault) of this. It just happens to be where these kids are having contact, within different degrees, with one another.

In another reported outbreak of (10) cases of the LeRoy symptoms at one school, many of the teens were also involved in sports activities including football and track. I will try to get details of this other reported outbreak posted within the next 24 hours. There is a lot of information on this other outbreak that is relevant to the LeRoy outbreak that needs to be sorted out first before posting.

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

A Timeline of Events Surrounding 10 cases of an Outbreak of Mystery Twitching at William Byrd High School in Vinton, Va

The PDF document attached to this post details (10) Cases (including a teacher) of a Mysterious Twitching Illness at William Byrd High School in Vinton,VA.

The events, seasonal timeline, of this outbreak are eerily similar to the LeRoy outbreak. There is one major difference. The obvious was right infront of the health officials the entire time of their investigation.

Links to each of the source articles is provided in the timeline. Unfortunately, they are not hot linked in the PDF. To read the source articles (please do) you will need to cut and paste the entire address into your browser window.

Staph, Strep (MRSA) was all over in these area schools.

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

New LeRoy Student With Strange Illness Emerges
WGRZ-TV

WRGZ-Reporting (link to article and accompaning video is below)

LEROY, NY -- LEROY, NY -- Another student is now dealing with that strange illness in LeRoy. Now the National Institute of Health is planning to come to the area to search for answers. This comes at a time when the parents of the sick students are losing confidence in local doctors and plan to work with a new specialist.

That doctor is Rosario Trifilett, a pediatric neurologist from Rockland County. He's a specialist in an autoimmune disease called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

Meantime, many of the parents of the other teens are having trouble accepting the diagnosis of Conversion Disorder or Mass Psychogenic Illness.

Dr. Mechtler says the National Institutes of Health has reached out to Dent to do additional high end testing on the girls. He says the tests will include functional MRI, DTI, and MRS at no cost to them. Of the 10 original patients seen at Dent, Dr. Mechtler says only 5 or 6 have come back and agreed to participate.

The NIH tests will happen this Sunday.

To Alert (Flutracker Moderator): RE: Post #53 - Please read my previous post - See why I believe you were right about the sporting and extra-curricular activities having something to do with this.

Read More:http://www.wgrz.com/news/article/152...llness-Emerges

[alert]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

Nice find. The above article also contains the text:

http://www.wgrz.com/news/article/152174/37/New-LeRoy-Student-With-Strange-Illness-Emerges

Instead of strep, Dr. Trifiletti says mycoplasma, or walking pneumonia, may be causing it. "We happen to be in an epidemic [of mycloplasma]. A lot of the times the kids won't have symptoms of walking pneumonia. Some of them may, but will get this instead," Dr. Trifiletti said by phone.

But Dr. Mechtler told Two On Your Side's Melissa Holmes by phone that he stands by his diagnosis of Conversion Disorder. He said he ruled out PANDAS because it's an exceedingly rare disease that occurs before the age of 11, although he says there are some exceptions. He says only one of the girls had a throat infection, but he will remain open-minded.

[Mycoplasma is apparently fairly difficult to detect, at least according to several other threads here at FT. But I don't know if this would explain the unusual epidemiology on this one, especially if some link to outdoor sports is suspected. Is it conceivable that this may be the result of several factors, which only when combined cause such cases? We will see what further testing reveals, and the NIH involvement will certainly help. Notably the article hints that PANDAS has been excluded based on the age group, not the result of negative cultures. - alert]

[Digger]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

My english is too bad : so I cannot explain..
do you have search at " basal ganglia and neurological disorders" ?

try this link for some anatomy ( beginner, intermediate, advanced ) http://thebrain.mcgill.ca/flash/i/i_...06_cr_mou.html
The functions of the basal ganglia are complex and still largely unknown

Anne, thank you for that link to the brain anatomy article in post #48 that was very helpful in understanding the pathways and interactions for memory, movement and cognition.

[Emily]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I agree with Alert that this is a very good find, Digger, and you did great work correlating the bacteria outbreaks that were going on at the same time.

Alert brought up the possibility of some 3rd factor in these cases and there's an article here that says there was a botulism cluster about the same time as the the 2007 Virginia area tic outbreak.

http://www.roanoke.com/news/roanoke/wb/140446

Second death may be linked to botulism
Health officials would not say that George Makarie's death was related to his wife's.

By Annie Johnson
981-3340

The Virginia Department of Health has confirmed a second death connected to the recent investigation of two possible botulism cases.

[snip]

Meanwhile, at least one botulism expert has said that health authorities' "veil of secrecy" over the cases has left the public without potentially lifesaving information.

[snip]

Local health officials have said that with the recent proliferation of public health emergencies in the Roanoke area, there was less attention paid to informing the public about the causes and dangers of botulism.

The other incidents involved unusual twitching reported at Vinton's William Byrd High School and Methicillin-resistant Staphylococcus aureus infections of students from various schools in the region.

"It's a good point," said Robert Parker, a regional spokesman for the health department. "It's been a busy time in the Roanoke area for public health."...

[Anne]

Re: Le Roy, NY, USA: Unusual outbreak of Tourette-like symptoms in 12 students at Junior-Senior High School

I m searching...
here is an old paper...( they did'nt have much serological test or antibody tests but some details are interresting )

Bulletin of the World Health Organization, 58 (2): 297-311 (1980)
Neurological diseases associated with viral and
Mycoplasma pneumoniae infections

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2395786/pdf/bullwho00425-0128.pdf

Helsinki, Finland
From 1971, outbreaks of acute respiratory disease
associated with Mycoplasma pneumoniae were
reported from different parts of Finland. The outbreaks
reached a peak in 1972, continued during 1974
and 1975, and began to abate in 1976. A number of
these cases of M.pneumoniae acute respiratory
disease showed neurological signs. However, during
these prolonged outbreaks, cases of neurological
disease occurred where there were no signs of acute
respiratory infection but in which there was laboratory
evidence of M. pneumoniae infection (a four-fold or
more rise in CF titre in paired sera).
Altogether, during the period 1973-76 inclusive,
M. pneumoniae was diagnosed by the laboratory in 69
cases in which neurological involvement was a leading
clinical manifestation.
However, in 12 of these cases,
viruses were also implicated, and in 2 cases the leading
neurological sign was convulsions. M.pneumoniae
was the only agent incriminated by the laboratory in
55 cases of definite neurological involvement. These
55 cases are the subject of the present study.
The first case was reported in June 1973 and was
diagnosed as aseptic meningitis. By the end of 1973, 12
cases had been noted. In 1974, there were 23 cases and
in 1975 there were 16. In 1976, only 4 cases were
diagnosed.
In 33 cases the main clinical manifestation was
aseptic meningitis, in 14 cases it was encephalitis, in 4
cases meningoencephalitis, in 3 Guillain-Barre syndrome,
and in 1 case hemiplegia. Fever was noted in 49
cases, respiratory involvement in 13 cases (signs of
upper respiratory infection in 10 and of lower respiratory
infection in 3), enteritis in 7 cases, and skin rash
in 3 cases. In 1 case of meningitis, endocarditis was
also diagnosed.

//...///Clinically,this picture of neurological involvement does not
usually differ from that caused by viruses except for a
high incidence of associated respiratory infection (6).
In the present study, respiratory infection was present
in one-quarter of cases, although it is most probable
that the respiratory symptoms were overlooked when
the more severe neurological disease was reported.

306