LeRoy Parents Want Answers about Tourette-Like Symptoms of 12 Female Students

Two parents on Dr. Drew last night stated that some of the girls' ASO titers (anti-streptococcal antibody titers) are elevated and the girls bizarre symptoms may be symptoms of PANDAS.
http://intramural.nimh.nih.gov/pdn/web.htm

Also discussed on the Dr. Drew show was that a physician prescribed prednisone to some of the girls with the elevated ASOs. It will be interesting to see if their tics increase, decrease, or experience no change with prednisone. Prednisone can temporarily cause other stressors (insomnia, hypomania, depression, and other side effects) which could exacerbate conversion disorder symptoms if they girls have do not have PANDAS. The one teen that was interview on the Dr. Drew show stated that her symptoms were actually getting worse, but it was not revealed if she was one of the girls who was prescribed prednisone.
 
One of the girls is on The Doctors today, it's on NBC in case anyone wants to watch
 
There was an article in the NY Post today that was offensive in so many ways. At one point, they implied sexual abuse was at the root, even as they spoke of one of the girls by name, and showed her picture. The doctor treating the majority of the girls attacked the characters of the ones he's not treating, accused the ones he is treating of being in denial, and characterized the parents who disagree with him as absentee fathers. HIPPA doesn't seem to be much of a concern for him.
http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ
 
http://today.msnbc.msn.com/id/46523792/ns/today-today_health/#.T0mlIvmS-Sp

Above article: Two of the girls reported to be "all better" and three others improving.

http://www.cnn.com/2012/02/24/health/new-york-medical-mystery/index.html

Above article reports three all better and six improved significantly.

http://healthland.time.com/2012/02/08/new-diagnosis-in-teen-tic-disorder-what-is-pandas/

"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."

This is interesting and something I had not heard before: Above article quotes Dr. Lazlo Mechtler as stating that some of the girls had been victims of bullying before their diagnosis.
 
I just read on FB that one of the girls ended up being diagnosed with lime disease and the tics & seizures will get better with treatment... :) (private page so I can't link...)
 
The official word is that it was mass hysteria.

http://news.discovery.com/human/study-confirms-mass-hysteria-in-new-york-school-120619.html

The Buffalo News reported, "A second study has again found that the twitches, involuntary sounds and seizures that beset a group of Le Roy students and attracted international media attention earlier this year had no environmental cause.... Those results from Leader Professional Services, encompassing nearly 6,000 pages of data from various air, soil and water tests done in and around school grounds, support the contention of treating physicians and school administrators that children in this rural community aren't being poisoned by the air they breathe or the water they drink."

Whatever the cause, most of the students have completely recovered.
 
http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=all

Katie was still twitching when she saw Thera early the next week at the art class they were taking together. “I was really weirded out,” Thera said. “I got upset, really upset.” When, a few weeks later, Thera’s symptoms came on, she and Katie did not connect the events
.
Katie and Thera thought some other girls in town might be suffering from conversion disorder. But not them. “No,” Katie said. “Me and Thera, we’ve definitely had times we’ve been stressed out, but this wasn’t the time we were stressed out.”

Article then goes on to outline that both these girls do have stressors - the mother of one has health issues, and the father of the other girl is an absentee dad. Gives lots of details about the history of the town (used to be prosperous, now is not so much) and about the treatments and testing the sufferers received. Author interviewed five of the girls, none of whom had relationships with their fathers and one of whom was almost homeless due to family and financial problems. One of the boys affected was a foster child who had recently switched homes right before his tics started.

http://www.theatlantic.com/health/a...eens-of-leroy-and-conversion-disorder/252582/

TCE has been linked to cancer, toxicologist Dr. LuAnn White told CNN. But it's not a proven carcinogen. Besides, White said, TCE would be cleared quickly from the body. After a few days, it wouldn't even show up in urine or blood tests -- and any symptoms would disappear. White, the director of the Tulane Center for Applied Environmental Public Health Sciences, said the students would have had to have been exposed to huge amounts of TCE for an extended period of time to show symptoms, and none of them, not even 36-year-old Marge Fitzsimmons, had been born when the TCE left behind by the derailed train cars was as its strongest.
 
http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=all

.


Article then goes on to outline that both these girls do have stressors - the mother of one has health issues, and the father of the other girl is an absentee dad. Gives lots of details about the history of the town (used to be prosperous, now is not so much) and about the treatments and testing the sufferers received. Author interviewed five of the girls, none of whom had relationships with their fathers and one of whom was almost homeless due to family and financial problems. One of the boys affected was a foster child who had recently switched homes right before his tics started.

http://www.theatlantic.com/health/a...eens-of-leroy-and-conversion-disorder/252582/

TCE has been linked to cancer, toxicologist Dr. LuAnn White told CNN. But it's not a proven carcinogen. Besides, White said, TCE would be cleared quickly from the body. After a few days, it wouldn't even show up in urine or blood tests -- and any symptoms would disappear. White, the director of the Tulane Center for Applied Environmental Public Health Sciences, said the students would have had to have been exposed to huge amounts of TCE for an extended period of time to show symptoms, and none of them, not even 36-year-old Marge Fitzsimmons, had been born when the TCE left behind by the derailed train cars was as its strongest.

Aha, but what about these girls' grandparents? Epigenomic research is bearing out that we inherit the fallout (in rna) of our grandparent's exposures and "sins," their smoking, drinking, medicines, toxic compounds, starvation, etc.. As a matter of fact, I currently believe that the hypertension and obesity epidemic in this country is a direct consequence of the Great Depression their grandparents endured.

So, my question about these girls is: were their families living in the area or working for the railroad when the TCE contamination occurred???

If you don't know about epigenomes or epigenetics, there are some great informational video (like Nova or Natl Geographic) that explain in detail. It's fascinating!! And, not only that, it made me aware of all the things I've been exposed to that will land on my grands, :(. On the upside, my sons, who aren't fathers yet, have this information early enough in life to start making conscious choices about what they do with their bodies as young men.

Here's a rather dry scientific look at the subject, I'll hunt down the others, too.

Epigenetic Inheritance
“What Genes Remember”


Epigenetic inheritance of acquired characters more powerful than inheritance of genes

The experience of one generation can modify genes passed on to the next via a variety of mechanisms that blur the distinction between epigenetic and genetic Dr. Mae-Wan Ho

http://www.i-sis.org.uk/epigeneticInheritance.php



Epigenetics

Environmental factors can alter the way our genes are expressed, making even identical twins different. Aired July 24, 2007 on PBS


Program Description

Once nurture seemed clearly distinct from nature. Now it appears that our diets and lifestyles can change the expression of our genes. How? By influencing a network of chemical switches within our cells collectively known as the epigenome. This new understanding may lead us to potent new medical therapies. Epigenetic cancer therapy, for one, already seems to be yielding promising results

http://www.pbs.org/wgbh/nova/body/epigenetics.html

the transcript:

http://www.pbs.org/wgbh/nova/body/epigenetics.html

and this Time Magazine article is good-- it gives a quick, concise, and not too technical rundown on the science and findings :

http://www.time.com/time/magazine/article/0,9171,1952313,00.html



I really do want to know how long the families have been in the region.
 
Wouldn't something like that be more likely to give you cancer, not a sudden outbreak of seizures? Especially since most of the victims have improved now, so it doesn't seem like they were suffering from something permanent caused by genetic changes.
 
I think the poison spill is definitely cause for concern but it is doubtful imo that it caused a genetic effect that suddenly triggers symptoms in twelve descendants of different people at the same time, within a few weeks, after thirty five years. If it was genetic it wouldn't act like it's contagious imo. It sounds entirely too coincidental to me that epigenetic changes would suddenly start to have a simultaneous effect after three decades in a group of girls of same age going to the same school.
 
I shouldn't say this, but I thought some of the girls were faking it when I saw them on TV.
 
I haven't been following this, but I did a quick search online to find out where this town is located. It's in Genesee Co. New York. According to Factory Farm Map, Genesee Co. has an extreme (the highest) density rating for factory farms. (http://www.factoryfarmmap.org/#animal:all;location:NY;year:2007)

If I were going to start looking for sources of localized breakouts of disease-like symptoms, I would start with industrialized agriculture, particularly hog or layer/broiler farming. I worry about the impact of factory farms far beyond their immediate geography, but for cases like this, I think it's worth looking into (that is if anyone would even allow it).
 
Did EB ever make a statement as to what she thinks this is all about? It is not like her to drop out if she thinks this IS an environmental toxin involved. JMO.
 
Did EB ever make a statement as to what she thinks this is all about? It is not like her to drop out if she thinks this IS an environmental toxin involved. JMO.

http://www.13wham.com/news/local/st...s-About-Tics-More/U2WyPIYztUGrtjamS2wOkg.cspx
“There is no link specifically that I can draw to environmental exposure because there are so many environmental exposures that occurred at the high school,” says Bowcock. [EB's associate]

Bowcock says there was aerial spraying from crop dusters near the school and also fracked gas wells on campus.

“Can I point to any one of these factors [as the cause of the tics]? Absolutely not. It could be a myriad of things.”

A majority of the meeting was focused on the 1970 Lehigh Valley Railroad derailment and the toxic plume that resulted from it. Around 35,000 gallons of TCE or trichloroethene spilled over during the derailment.

Bowcock blasted the Environmental Protection Agency and the federal government for failing to properly clean up the site. Bowcock said in his team’s testing, he found TCE still present in groundwater and in the rock quarry where children and teens frequently swim.


http://www.leroycsd.org/district.cfm?subpage=1458956

With the beginning of the new school year, we are asking all media outlets and other individuals, to please respect that the Le Roy School District will no longer be commenting on student health issues within our schools. We have been warned by medical experts that the continued media attention on the Le Roy School District and greater community runs the risk of negatively impacting the students previously diagnosed with conversion disorder that have recovered and can also serve as a catalyst for new symptoms to develop. We respectfully refer you to our web site if you would like information that the District has previously issued regarding this matter.
 
Looks like they've narrowed it down to....

....Tourette's
....mimicry
....social media
....Moregellons
....stress-related
....OCD
....PANS
....infection
....head injury
....genetics
....antihistamines
....toxic spill in '70s
....natural gas well
....fracking
....other
 
Looks like they've narrowed it down to....

....Tourette's
....mimicry
....social media
....Moregellons
....stress-related
....OCD
....PANS
....infection
....head injury
....genetics
....antihistamines
....toxic spill in '70s
....natural gas well
....fracking
....other
Good sleuthing, Wfgogot! :websleuther:
 

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