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Open Letter to the Town of Leroy, NY: Learn Lessons from the Autism Epidemic

Schoolboy-blundersBy Kevin Barry

TOWN OFFICIALS:  LISTEN TO AFFECTED FAMILIES, BE PUBLIC AND TRANSPARENT WITH ENVIRONMENTAL TEST RESULTS & DON’T OFFER RIDICULOUS EXPLANATIONS BLAMING THE INJURED.

The heavy rains and flooding in August and September 2011 may have lead to a release of dichloroacetylene (DCA) in LeRoy, NY.  DCA is a neurotoxic decomposition product of trichloroethylene (TCE) which spilled in the area 40 years ago due to a train derailment.  DCA has been shown to cause tremors and cranial nerve palsies – or the more vernacular name - tics.  More investigation of this possible connection is warranted.

Mass hysteria?  Conversion disorder?  Really? Have you learned nothing since the Salem Witch Trials? Those explanations are no more ridiculous than trying to blame refrigerator mothers or old sperm for the autism epidemic.   Wasting time on ridiculous explanations is tragic because it does not help those currently injured and it does not prevent new injuries.  LeRoy psychiatrists?  Please admit that you do not know what happened to these girls and move along.

I listened to the families and the girls who were experiencing the symptoms, which lead me to question, why LeRoy, NY?  Why now? 

After reading about the 1970 TCE spill, which is unique to the LeRoy community, I began searching to see if TCE could have a role in the neurological issues.  Additionally, could the massive flooding that the LeRoy area experienced in the aftermath of both Hurricane Irene and Tropical Storm Lee help explain why this is happening now, and not previously in the last 40 years?

The town officials and school district should be transparent with their environmental test results and provide those results to the public as soon as possible. The town officials and school district should also allow for private testing to search for TCE/DCA exposure to corroborate their results.   I believe there is sufficient rationale for additional testing to determine specifically if TCE/DCA plays a role in the physical issues these children are experiencing.  

While the potential connection between TCE/DCA and the girls with neurological symptoms is speculative and needs to be confirmed by testing, the potential connection warrants specific investigation.   An article from 1984 in the journal Archives of Toxicology suggests all that is required to form DCA vapor is TCE plus “moist concrete.”  As a result, in addition to the school property, many locations in LeRoy should be tested for TCE/DCA contamination.

A 1944 paper describes how DCA may have caused “Cranial Nerve Palsies” in 13 patients (10 women) when TCE was used as an anesthetic.  The 1944 paper makes a very important general point about toxicology: 

“The fact that only a small proportion (of those exposed to the anesthetic) showed symptoms would mean that there must be great variation in susceptibility. Such variations are well known in toxicology.”

LeRoy officials and public health officials should allow private environmental testing throughout their town, which like activists like Erin Brockovich have called for recently.  They should test specifically for TCE/DCA exposure to either rule it out, or if those affected have been exposed to TCE/DCE, to help identify the best available treatments and the best possible methods to prevent injury to others.    

Kevin Barry

Rationale for testing specifically for TCE/DCA exposure

1)    In 1970, TCE spills in train derailment in LeRoy, NY.   In 1999 it was named a Superfund site by the EPA.

EPA Places Site in Genesee County on the Final Superfund National Priorities List
Release Date: 01/19/1999

http://yosemite1.epa.gov/opa/admpress.nsf/8b75cea4165024c685257359003f022e/835e2e6bf0e8ac3585257244006aefe2!OpenDocument&Start=2.7&Count=5&Expand=2.9

"NEW YORK, N.Y. -- The U.S. Environmental Protection Agency (EPA) has placed the hazardous waste site in LeRoy, New York on the final Superfund National Priorities List (NPL), the federal list of the nation's worst hazardous waste sites. ….. In 1970, the Lehigh Valley Road site was contaminated by a chemical spill from a train derailment, which caused contamination of soils and drinking water wells in the area.

Despite cleanup measures directed by the state and undertaken by the party responsible for the pollution immediately following the accident, the Lehigh Valley Road site still contains soils with elevated levels of primarily trichloroethylene (TCE) and a contaminated groundwater plume extending almost 4 miles east and southeast of the site."

2)     TCE may have been disturbed by the massive flooding of August-September 2011 as a result of Hurricane Irene and Tropical Storm Lee.  The illnesses in LeRoy began in September 2011 just after the historic rains.

Tropical storm Lee came right after and tracked further west than Hurricane Irene, causing massive flooding . 
http://www.foxnews.com/weather/2011/09/08/remnants-lee-bring-fresh-flood-worries-to-east/

There was additional flooding in nearby Rochester on August 14, pre Irene and Lee. 

Record Rain Soaks Rochester

Posted at: 08/14/2011 8:02 PM |

The Rochester area set a record for rainfall Sunday, with about 1.75 inches in a 24-hour period. It was the most the city has ever gotten on August 14th. The heaviest rain fell between 2:30 p.m. and 4:00 p.m., stranding drivers across the area.

http://www.whec.com/news/stories/s2240639.shtml

3)      When TCE comes into contact with alkaline materials, such as moist concrete, it forms Dichloroacetylene (DCA), a neurotoxin.  The heavy rainfall and flooding may have caused TCE to come into contact moist concrete (or other alkaline materials).

Formation of dichloroacetylene from trichloroethylene in the presence of alkaline material--possible cause of intoxication after abundant use of chloroethylene-containing solvents 

“This finding suggests formation of dichloroacetylene, when trichloroethylene comes into contact with moderately alkaline material, such as moist concrete.”

http://hero.epa.gov/index.cfm?action=reference.details&reference_id=758656

4)    Inhaled DCA likely caused Cranial Nerve Palsies, as described in a 1944 paper, discussing the use of TCE as an anesthetic.

CRANIAL-NERVE PALSIES WITH HERPES FOLLOWING GENERAL ANAESTHESIA (1944)

“Evidence is given for chemical reactions between soda-lime and trichloroethylene in the system, with the production of dichloroacetylene.”

“The fact that only a small proportion (of those exposed) showed symptoms would mean that there must be great variation in susceptibility. Such variations are well known in toxicology.”

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2283713/pdf/brmedj03928-0003.pdf

5)    DCA is a decomposition product of TCE and can cause tremors.

“The substance (DCA) is not commercially available but it is a decomposition product of trichloroethylene”

http://www.pesticideinfo.org/Detail_Chemical.jsp?Rec_Id=PC42822

6)    10 of the 13 people who developed facial palsies in the 1944 paper were women.  If TCE is the problem, the TCE decomposition neurotoxin DCA may be more toxic to women than to men for some reason.

 Kevin Barry is the parent of a child with regressive autism.

 

Comments

Sarah

Wow. I am disturbed by the overall lack of intelligence these comments demonstrate. There's a few in there worth reading, but after my browse through, it seems there are a lot of people capable of starting a thought and yet clearly lack the ability to carry one through.

gwen

Kevin- you missed an important point in the investigation of the groundwater:

A 1999 report indicated "concentrations in groundwater samples change dramatically as the water table rises and falls seasonally." (...) "This observation led investigators to conclude there is likely to be a large mass of TCE residing in the vadose zone of the bedrock and that this portion of the source area contamination comes into contact with ground water only as the water table rises."

http://books.google.com/books?id=GIAw6-V1LawC&lpg=PA209&vq=leroy%20tce&pg=PA211#v=snippet&q=leroy%20tce&f=false

Mary

I find it highly unlikely that a toxin or virus will only affect certain girls in a certain school in a certain area. The Gardasil theory isn't likely because most of the girls haven't had it yet. It's good old-fashioned mass hysteria, people. The mind is very powerful, and it can fool itself and cause real symptoms. It's easy to jump on the bandwagon and claim that chemical XYZ caused this, but there is not always a physical cause for everything. An individual does not have to be mentally ill or incredibly stressed to develop mass hysteria. It can strike anyone (but it seems to be more common in females). Fortunately, it always resolves itself with time. You'll see. :)

Peggy Fearing Hankin

I Read a Pamphlet back in 1980/1982 from CSUN- California State University Northridge. "The Poisoning of America" Toxic Spills. There seemed to be some relevent information in the material. It seems to me, that there was without a doubt many dead or suffering animals. Strange reptile behavior in lizards. If the EPA wasn't studying this site then the Railroad and Chemical Companies were. And they have probably hidden the information due to the long term/horrible effects that they did not want to be libel for. Intuitively speaking, there is more to this case than tics.

Chip Johnson

If real I don't get the fracking connection and I have some doubts after watching some of the videos of the girls, one looked frighteningly real and the other girl looked like a fraud, subconscious or otherwise. The biological differences between adults, teens and men, women are not as great as the similarity of teen girls . Too strange that only teen girls are affected unless it was a pregnency.

Theresa O

@Jen

I totally agree. Is it really so easy for the medical community to believe that a dozen girls in one school all have the same mental illness? Perhaps it is contagious and they need a vaccine for it!

nyscof
Jen

Dr. sharp on Dr. Drew condescendingly said, " if it's emotionally based, stress will make it worse." Look jackass, it would be equally true that a biologically caused illness would be worsened by stress. Stress exacerbates any illness, idiot. Sorry but Im getting angry about some of these "professionals."

Benedetta

Vincent; It may not be a cloud burst here or there, but it has been a rather wet season here in the Kentucky. Maybe no record breaking, every day cloud burst just a constant wet.
Anddddd Maybe it has happened before, except school was out, or it happened on a weekend. This seems to happen in Sept on a schoolday - perhaps?

Patrick

Since not all received Gardasil I would be curious if they all received the DPT shot as I'm pretty sure these girls are the first cohort of that age that the CDC started recommending it to. Also Erin mentions on Dr. Drew that there is a list of others with other ailments including cancer, but at the end she states that there are several cases of 2 1/2 year olds whom have tic-like disorders in particular. Lastly I think it is interesting that the woman that came down with the condition in October is a Nurse.

Jenny

To: Iannelli - there are a multitude of factors playing into how quickly things seep into the groundwater: type of soil, type of groundcover, amount of surrounding pervious surface vs impervious surface. It's possible that construction in the area changing pervious surface to impervious surface has changed the direction/rate of flow and seepage since the original spill. Comparing area construction dates to flooding dates with well monitoring results might be helpful, and could show geographical pattern shifts in well contamination. Additionally, depending on how recent the fracking wells were installed, fracking would open up fissures in the underlying structure, and horizontal fracking can go up to 4000 feet off the vertical, so one can imagine how that could theoretically increase toxic flow into the area from the original site. Add a flood into the mix: would that raise the water table, but this time combining the train wreck toxins with fracking material up to well water levels?

The environmental implications are complex and real.

Also, I keep hearing not all the girls had the Gardasil shot. Which of them had the meningitis or meningitis/flu combination, which also brings it's own set of adverse actions.

In kohning

It would be easy to test soil, air, and anywhere. Buy your own kit!

Taximom

@ Ottoschnaut:
Your disbelieving eyes missed one little detail: They want to compare vaccinated with "unvaccinated OR vaccinated-according-to-an-alternate-schedule."

In other words, it's just one more smoke-and-mirrors game. They'll compare kids who received 60 vaccines with "unvaccinated" kids who only received 50, and claim that there is no difference.

Or maybe they'll even claim that getting 10 more vaccines reduces the risk of autism.

I wouldn't trust them as far as I can throw the bathtub.

Mom23boys

What about the five wells being 'fracked' near the school?

Jen

If I have to listen to one more shrink or doctor condescendingly say, " they're not faking it" yet still basically say it's psychologically caused, I think I will scream.

Jen

Good questions, Vincent, maybe spread of certain chemicals gets to a critical threshold or moves along and becomes more "exposed" for unsuspecting persons - just possibilities but perhaps someone with expertise in that field would be able to offer different or more detailed explanations. Certainly seepage happens in stages and then again, using soil to construct things like baseball diamonds may change the landscape/exposures. I worked on a "plant rescue" nature ground and we made a decision to use soil with turf to construct the burms. Man did we have a lot of invasive dandelions to pick out!

Corinne

Jean - I live in LeRoy and found this feed by doing a simple search - and I have posted on my Facebook. Of course not everyone will see it. But I'm doing my part to pass it around.

Jen

CVI (chronic venous insufficiency)

Vincent Iannelli, MD

"The Rochester area set a record for rainfall Sunday, with about 1.75 inches in a 24-hour period. It was the most the city has ever gotten on August 14th. "

That was only a record for that one day in history - August 14th. There are plenty of other days in history in which the area got more rain in a 24 hour period. For example, there is one day in 1974 in which they got 3.85 inches and another day in 1987 when they got 3.25 inches. And in 2005, which I think is well after the school was built, they had 3.08 inches in one day.

If it was the rain stirring things up, why didn't it happen before?

Jean

Is this letter by Mr. Barry posted or published any where that someone in Leroy, NY, might see it?

Jen

Good point Natassa. My friend with MS had the Zamboni procedure done and was perfect for a couple of months. Unfortunately she re-stenosed (assessed by a special ultrasound technique) but will try it again. It is very challenging for them to keep these tiny veins open. She feels positive via testing that her real condition is the CCSVI and not MS. Just goes to show you how things evolve. The neuros are fighting these developments tooth and nail as well. Her near at the Toronto MS clinic has been appallingly rude and nasty to her.

Sarah

A 1944 paper describes how DCA may have caused “Cranial Nerve Palsies” in 13 patients (10 women) when TCE was used as an anesthetic. The 1944 paper makes a very important general point about toxicology:

“The fact that only a small proportion (of those exposed to the anesthetic) showed symptoms would mean that there must be great variation in susceptibility. Such variations are well known in toxicology.”


"Variation in susceptibility"..they've known this in 1944.

This is very significant and relevant to autism in that it shows that sensitive populations do exist. The fact this has been well known since 1944 makes me question why the medcial communkty doesn't require infant screening to identify those susceptible children prior to vaccinating or is vaccination a way of ridding the gene pool of those "weak links" who are more prone to chronic disease.

Ottoschnaut

Maybe there is an attempt (finally) to learn from past mistakes.

Correct my disbelieving eyes, but is this not the IOM soliciting ideas for a vax v unvax health outcomes study?

http://www.iom.edu/Activities/PublicHealth/ChildhoodImmunization.aspx

Benedetta

I did find it interesting that when someone on here blogged for the first time that there had been a TCE spill, and I looked it up --to find that it was used at the turn of the century --- to put people asleep for surgery.

I have noticed that "ALL" the girls that are interviewed -- all stated that they had awoken from a nap to find they had tics!

A nap induced by breathing in all day at school an old class of Anesthesia!

I would hate to be a teacher at that school trying to teach kids on a rainy day as they breathed in something that was supppose to put people to sleep for surgery!

Natasa

Matto, may I remind that Multiple Sclerosis was once said by 'experts' to be hysteria. Parkinson's was also explained away as conversion/all-in-the-mind. History is littered with cases of hysteria that later turn out to be something entirely different.

The earth was flat until we found out it wasn't. Psychiatry is the religion of our times, 'explaining' away the unexplainable. Perfectly Normal Beasts running along the plains.

Jeannette Bishop

Matto,

I would also recommend reading Ch. 2, "The Age of Hysteria" from the book in the left sidebar, "The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic" for an original, I believe, historical perspective of the diagnosis that brings in consideration of iatrogenic mercury exposure.

Personally, I would not be surprised if every case of hysteria has involved unrecognized hazardous chemical exposure as the sole or a contributing cause.

Kevin Barry

Hi Matto,

My perspective on the mass hysteria/conversion disorder diagnosis is that it could be a rationale used by health and environmental agencies to avoid proper investigation of an actual disease process happening to these girls.

If there's no real disease - are CDC and NYS Department of Health fully engaged? If there's no real disease - is the NYS DEC monitoring the 55 monitoring wells they installed with urgency? What if they didn't dilute the well water which tested positive for TCE - what would the DCA levels be?

I hope this testing is currently being done by NYS DOH/DEC and the CDC, and that they will be transparent with the results.

A PhD or two offering an opinion of MASS HYSTERIA! should not stop important environmental testing by state and federal agencies.

http://www.atsdr.cdc.gov/HAC/pha/pha.asp?docid=226&pg=1

D. Environmental Contamination and Exposure Pathways

As part of a 1993 remedial investigation, NYS DEC's consultant Dunn Engineering Company installed 55 monitoring wells at 17 locations. Up to four wells were installed at each location to monitor groundwater at different depths. In the area adjacent to the spill site, trichloroethene was detected at a maximum concentration of 58,000 mcg/L. The average level of trichloroethene in the spill area ranged from 1,000 to 10,000 mcg/L depending on the depth of the well. Due to the high levels of trichloroethene, these samples had to be diluted for analysis. Cis-1,2-dichloroethene, a breakdown product of trichloroethene, was not detected in most samples, possibly due to the dilution. Outside of the spill area, the maximum level of trichloroethene detected was 2,100 mcg/L; most samples contained trichloroethene below 100 mcg/L.

The NYS DOH has collected water samples at 127 private wells in the area. Trichloroethene has been detected in 49 private wells at concentrations from 0.5 to 7,200 mcg/L. Most of the contaminated wells contain trichloroethene at levels between 5 and 100 mcg/L. Cis-1,2-dichloroethene has also been detected in a few private wells adjacent to the site at concentrations from 0.5 to 38 mcg/L. Although carbon treatment systems were provided to some of the residents with contaminated wells by the railroad company immediately after the spill, there was no follow-up testing and maintenance of the systems. Residents with contaminated water supplies may have been exposed to site-related contaminants via ingestion, inhalation, and dermal contact for up to about 20 years.

Jen

Matto, "affliction without cause." Well I am sure that there have been cases of people outright faking conditions and even people who have some psychological issues that could explain some physical symptoms but the community here has seen countless, and I mean countless instances of children suffering known effects, yes KNOWN effects from vaccines (and I'm sure other environmental toxins exposures) and yet being turned away in court (vaccine manufacturers have been absolved of liability by Regan) and largely by the medical community, who either doesn't know much about PANDAS/PANS and neurological issues or even worse they have a monitory interest in denying harm from pharmaceutical products. Vaccines are a huge growth market, with more mandated shots being added to the schedule by the minute, especially in the USA. In Canada for ex, we don't give children hep b at birth. I find it odd that many of these children who show neurological problems are seeing improvement with specialized treatment. And no, that's not all placebo effect.

Benedetta

Matto;
People when stuck together in a community, or a school can get some pretty strange ideas -- as the girls of one highschool all decided to get pregnant in one year and have their babies together.
But ideas of that kind is a whole different ball game to illness.
But neurological illness is hardly hysteria.
Cancer is that a hysteria.
Please educate me on well documented but poorly understood cases of hysteria???

The bull stops here

Matto,
If a catastrophe such as a tornado suddenly strikes a location where many people reside - yes, there will be mass hysteria, and physical symptoms could include well-known responses to stress such as headaches, high blood pressure and even heart attacks. But to suggest that sudden onset of highly unusual symptoms such as severe facial, body and vocal tics is evidence of mass hysteria is beyond absurd - particularly where there is no actual evidence of any catastrophic, hysteria-triggering event.

Where is the evidence that severe tics are a symptom of stress in people with no such previous symptoms? What are the parameters for how "mass hysteria" can be expressed physiologically - or are there none? The label has become a default diagnosis - a dumping ground - for all unexplained physical symptoms. Where is the science in that?

Matto

Thank you for an interesting article. I'm glad that this site and other news outlets are pushing for environmental testing in Leory, NY. Environmental testing should be done.

I wanted to get some clarification on the author's position that mass hysteria is an unreasonable explanation for the recent events in Leroy. It should be noted that mass hysteria and hysteria in general are legitimate, well documented, but poorly understood phenomena. Hysteria can spread like an epidemic, present real physical symptoms, and (perhaps relevant) has been documented to occur primarily in women. The public is largely uneducated in hysteria and usually interprets it as some kind of a deception by those diagnosed - that they are inventing or imagining their symptoms. The Leroy school administrator said something like (I paraphrase) "it's not mass hysteria - these girls aren't faking it," which just establishes a complete misunderstanding of what hysteria is or how it works.

I am all for a scientific, transparent, and impartial investigation into what's going on in Leroy. I understand the town may have a lot to hide if its water and land are tainted, but it's in everyone's best interest to know about it. However, until those investigations are done and environmental factors are established it's just one of many speculative causes, which at this moment still include mass hysteria.

It's also worth mentioning that among communities on the Internet and in general there is such a pervasive "culture of blame" that the idea of an affliction without cause (idiopathy) is seen as ridiculous. For that reason, idiopathic diagnoses are never easy to give or to receive, but it doesn't make them any less real.

Not an MD

I am so glad to read your letter, Kevin. Please see this link provided by Jeanette B. in another article here:
http://www.wgrz.com/news/article/152686/13/Erin-Brockovich-Gibbs-Looking-into-Mystery-Illness-in-LeRoy

If the Leroy school does have five natural gas wells, some of which are being used for fracking ON THE ACTUAL PLAYING FIELDS at the school, then there are many more chemicals that need to be investigated, too. If the school does not allow proper independent testing, they deserve to be sued by all of the children affected. These children need and deserve answers. They deserve proper medical treatment to help them recover. If the school is allowing the poisoning of children for profit, then it should be shut down for the sake of the children. Bus the children elsewhere. I sure hope this is not a cover-up by the fracking industry, and by the school that is allowing fracking on their property. That is just not acceptable, and it should not be tolerated.

Diane W Farr

This is what I know being a parent of child injured by vaccines and reading this article. Cement and rain is to blame; not the toxic spill.

Benedetta

Kevin Barry;
Good article. Environmental problems are harder to solve today than in the past when they just threw things around helter selter! It takes officials willing to be multidimensional, to actually look, to consider all factors including the weather, old spills, new concrete, drainage!
Building a school in a swamp because the land is cheaper might not be a good idea???

This article sounds very reasonable - It takes TCE from a reported spill to be pushed down to the school built in low lying area by very heavy rains, coming in contact with the concrete of a new building and forming a vapor of DCA-- vapor to be breathed in which is just the same as a shot delivering it into the body.

Did this 1944 paper note the out come of these patients?
Will these girls over time get better-- more than better - will they return to their former selves?

barbaraj

This is a very important statement! and likely accounts for the "genetic" weaknesses that lead to many diseases, especially of the autoimmune type.
"The fact that only a small proportion (of those exposed) showed symptoms would mean that there must be great variation in susceptibility. Such variations are well known in toxicology.”
However, should healthy young women have been the most susceptible of any group? I always think..small in size, then routes of exposures...absorption..eyes..skin..ingestion..
The chemicals certainly seem important, I just question "why" this group, or again is it synergy that will never find an explanation. Did these girls do anything else, birth control, diet drugs, laughing gas ( legally with dental work), receive boosters of vaccines before the start of this school year...etc..and on..remember wasn't it a similar "group" that suffered toxic shock syndrome..tampons and staph?

Anne McElroy Dachel

I keep seeing the words "mystery" and "mysterious" in stories about Le Roy. It reminds me of how autism is the perpetual puzzle to officials who just can't figure it out. Another puzzling disorder. I can't wait till they start a huge non-profit to fund the research looking for the gene that causes tics.

Anne Dachel, Media

Sarah

I hope the investigators don't have tunnel vision on what chemicals they are testing for. They must also test for pesticides like Round-up (glyphosate) and Armezon (very toxic and widely used in agri-business). Girls should have their urine tested for chemicals too.

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