Le Roy

The search for a cause of a tic disorder in more than a dozen teenagers in Le Roy is moving toward a look at environmental causes.

The Democrat & Chronicle was the first to report that Erin Brockovich, Lois Gibbs and the Sierra Club are joining the investigation into what may have caused the tics, apprently not accepting the diagnosis of Dr. Laszlo Mechtler and others that the problem is "conversion disorder."

While other theories -- such as problems with vaccines -- have not been ruled out among those searching for other answers, the new environmental focus is getting a lot of play in the national media. Brockovich's interest has particularly drawn coverage.

On the vaccine front, Marcella Piper-Terry, contacted The Batavian today to offer her help.  Her site talks about "vaccine injury," and not just from the HPV vaccines.

We wanted to drill down a little more on the HPV vaccine issue and PANDAS, which is a strep-related neuropsychiatric disorder, so we called the NYS Department of Health and requested an interview with Dr. Gregory Young.

Jeffrey Hammonds, spokesman for the department, returned the call. 

He said HPV vaccines were ruled out because a majority of the original 12 girls have not been vaccinated.

He said he would get back to us on the details of why PANDAS was ruled out.

As for Brockovich, there are rumors that she will be in Le Roy either Saturday or Sunday.

The Southern California resident first gained fame as a paralegal (for the Westlake Village law firm of Masry & Vititoe) who helped initiate a lawsuit against Pacific Gas & Electric Co. (She lives in Agoura Hills, a tony community just over the Ventura County line in Northwest Los Angeles County. Ronald Reagan once owned a ranch there.)

The success of the suit, which resulted in the largest toxic tort injury settlement in U.S. history, eventually led to a popular movie titled "Erin Brockovich" with Julie Roberts in the lead role. (Roberts won an Oscar for Best Actress and the film, released in 2000, was also nominated for Best Picture and Best Director.)

In some circles, Brockovich is a bit controversial. Journalist Michael Fumento has been especially critical of Brockovich since 2000.

In 2003, Time Magazine published Erin Brockovich's Junk Science:

The suit, on behalf of Hinkley, California residents, focused on an ionized form of chromium called chromium-6, a rust inhibitor that was carelessly dumped by the giant utility, Pacific Gas & Electric, and seeped into the groundwater used by the town's residents. In bringing suit against PG&E, Brockovich's law firm charged that chromium-6, in addition to causing cancer, was responsible for disorders ranging from rashes and nosebleeds to lupus, miscarriage and Crohn's Disease in 600 of Hinkley's residents. The case eventually went to arbitration, and a panel of judges awarded residents a settlement of $333 million dollars, 40 percent of which went to the lawyers. For her efforts Brockovich received a two million dollar bonus.

And what are the facts? There is no doubt that PG&E irresponsibly dumped chromium-6, and that the substance is a carcinogen. When inhaled regularly over long periods of time, it can cause cancer of the lung and the septum. But current studies show that, ingested in the trace amount found in Hinkley's water, or in food, it's harmless. According to a 1998 Environmental Protection Agency report on chromium-6, "No data were located in the available literature that suggested that it is carcinogenic by the oral route of exposure."

According to the D&C, the environmental investigators -- including Gibbs of Love Canal fame -- and the Sierra Club will be looking at gas wells and alleged toxic dumping at the Le Roy school site.

Five natural gas wells owned by the LeRoy school district ring the junior/senior high school building, which opened in 2003. The wells have undergone the controversial procedure known as hydraulic fracturing, state environmental officials said. About 25 Western New York school districts own gas wells, though none have more active wells than Le Roy.

"We believe that it would be premature to draw any correlation between these tragic and unexplained illnesses and the gas wells on the school's playing fields," said Roger Downs of the Sierra Club's Atlantic Chapter. "But we have seen no evidence that these wells were adequately considered by the Department of Health as potential contributing factors to the illnesses in the initial investigation."

...

Rumors persist that the school or ground sit atop rock and soil trucked in from a part of Le Roy still suffering the after-effects of a huge spill of the toxic solvent trichloroethylene in a 1970 train derailment.

Two pharmaceutical companies that make HPV vaccine have hired Dr. Laszlo Mechtler in the past as a speaker, paying him more than $150,000 in fees in 2009 through 2011, according to a ProPublica database.

Mechtler is the neurologist who reportedly diagnosed 11 teenage girls in Le Roy who have been displaying tics and verbal outbursts with "conversion disorder."

State public health officials relied, at least in part, on Mechtler's diagnosis to rule out vaccines for the sexually transmitted human papillomavirus as a cause.

The HPV vaccines are known as Gardasil and Cervarix, manufactured by Merck & Co. and GlaxoSmithKline.

While tics and verbal outbursts are not listed on the Centers for Disease Control and Prevention website as a possible side effect of either drug, the drugs have been known to cause serious health issues. According to WebMD, the vaccines have been tied to rare cases of Guillain-Barre Syndrome, neurological disoder that causes weakness.

Several observers of the Le Roy situation have suggested HPV vaccine as a possible cause, but at a public meeting in Le Roy Jan. 11, Dr. Gregory Young said HPV had been ruled out as a cause.

In a search of Google for "tics gardasil cervarix," pretty much all the results tie the outbreak in Le Roy to the drugs, but actual evidence of the drugs being tied to such an outcome is hard to find.

Mechtler was later interviewed by NBC and identified himself as the doctor who examined 11 of the girls and diagnosed them with conversion disorder, even going so far in another interview to blame 9/11 terror alerts for causing stress in the girls.

According to Propublica -- a nonprofit investigative journalism organization -- Mechtler received the following payments from Glaxo and Merck:

• $62,400 in speaking fees in 2009 from Merck
• $75,200 in speaking fees in 2010 from Glaxo
• $19,819 for research from Glaxo in 2010
• Another $10,000 from Glaxo in 2011

A one-vehicle accident is reported on the Thruway with one occupant entrapped and possibly unconscious.

Mercy Flight is on standby.

The accident is in the area of mile marker 383.6 in the eastbound lane.

Le Roy fire and ambulance dispatched.

UPDATE 1:09 p.m.: A dispatcher informed the Le Roy chief that he spoke with somebody in the toll booth center who said the Thruway Authority did not want Mercy Flight dispatched. The dispatcher said he informed the person that it was the fire chief's call.

UPDATE 1:14 p.m.: The victim is out of the car and with State Troopers on scene. The car is well off the road and on its side. Mercy Flight can stand down.

UPDATE 1:39 p.m.: Le Roy Ambulance Service is headed to Strong Memorial Hospital with two patients on board. Le Roy fire crews are back in service.

WGRZ, Buffalo, is reporting that there are now 15 cases in Le Roy of teens with tic symptoms, including a boy. Also, the station interviews a doctor who treated a similar case in North Carolina a decade ago. His diagnosis: conversion disorder.

An Albany television station is reporting that two girls have developed tics and verbal outbursts and linking the report to the 12 girls in Le Roy who have suffered similar symptoms.

As for a possible connection to the cases in Western, NY, both girls did eat at a restaurant in Le Roy this summer.

"Maybe she had been carrying something that she brought with her to Le Roy," says Nicholson.

The piece on the girls describes joint pain along with the tics and verbal outbursts. One girl was diagnosed with Tourette Syndrome, though her mother doesn't seem to accept the diagnosis.

Meanwhile, The Week, a British publication quotes Dr. Lazlo Mechtler, the neurologist who has reportedly examined 11 of the 12 girls from Le Roy, as blaming the outbreak locally on terror alerts.

“Ever since 9/11, Americans have been subjected to warnings of orange alert and red alert, and, unlike Israelis for instance, they are not culturally used to it,” says Mechtler. “What has happened to these girls is the result of Americans being made to live in fear. We are going to see more of these outbreaks.”

According to the article, Mechtler has not examined Thera Sanchez, whom the article says was the first Le Roy girl to exhibit symptoms. But in her Today Show appearance, Sanchez said she was in treatment.

At the community meeting Jan. 11 in Le Roy, the mother of the reported 12th girl said she hadn't been to treatment yet because she was the last of the girls to develop symptoms.

In the past couple of weeks, we've received emails from people all over the United States with their own theories and suggestions. It would be a time-consuming task to chase down every theory and get response from officials, and, as we know, there's only so much officials can, or are willing, to say.

After the jump (click the headline to read the whole thing) are three of the emails we've received.

From Susan Walker:

Here is what I hope will be helpful information for the girls afflicted with the strange tics and Tourette-like problems in New York. I’ll try to keep this short!

Our grandson was afflicted with Tourette-type tics along with accompanying nervousness and difficulty sleeping quite suddenly at the age of about 7 years. It was heartbreaking to see him struggle with it. For a year or so he was treated with various medicines all of which left him lethargic but not improved. Our daughter asked me to research anything I could find to help him so I embarked upon a reading and Internet frenzy for information.

The only thing I found, aside from medicines he had already tried or things that seemed worse than the problem, was a fair amount of anecdotal evidence, which was first noted in a book by Mitzi Waltz about Tourettes Syndrome. She reported that a number of boys had found  great relief from the symptoms by taking grape seed. I passed this information to my daughter after researching grape seed and finding it to be very high in antioxidants and otherwise harmless.

To make a longer story short, our grandson showed marked improvement in just a couple of weeks and he felt much “better inside” as he described it, after taking 1 mg. per pound of body weight twice per day of grape seed extract in pill form. Within a month or two he had no symptoms at all and was able to sleep much better. He is now 18 years old and has been tic free all these years. He still takes grape seed.

I have kept myself open for any articles or info over the years which might explain this phenomenon and have run across a few things which suggest to me that perhaps the area of the brain which is involved in causing tics and related symptoms can be affected in some susceptible people by a sort of autoimmune response to oxidants which build up in their blood either from outside causes or perhaps from their own metabolic peculiarities.

In any case, grape seed has been a lifesaver for our grandson and there are numbers of mothers and sons who report similar experiences. It’s worth a shot and I’d surely try it if my daughter was one of  these cases.

From Denise Grubbs, RN:

I am founder and director of PPARS: PANDAS-PITAND Awareness & Research Support and I am also a Registered Nurse. I just registered to leave a comment as I am very concerned about the underlying cause of tics in these children.

I wonder if they have tested the girls for strep, myco p, Lyme and related diseases. I hope if they used titers such as ASO & Anti-DNase only that they did not use this to rule out this condition as we know that some kids never elevate titers. Inability to elevate titers does not rule out PANDAS-PITAND -- it only means we have to look harder before it can be ruled out as a cause.

Another potential cause to consider is the GARDASIL vaccine. Because only girls are reported and the age, we have to consider this as a potential cause.

There are physicians who are knowledgeable about this condition and could fully evaluate the students to determine if it can be ruled out or not.  Treatment can bring healing, but it is important to catch it early.

How can we reach someone who can fully evaluate to help these girls?

Website: http://www.pandas-pitandawareness.org/Home.php
FB page: https://www.facebook.com/pages/PANDAS-PITAND-PANS-Awareness-Ribbon-Research-Support/104784939604627
Twitter: https://twitter.com/?ref=nf&utm_campaign=PANDAS_PITAND&utm_content=146545841648308224&utm_medium=fb&utm_source=fb#!/PANDAS_PITAND

From Laurie Endicott Thomas, www.gorillaprotein.com

I was greatly disturbed to see the girls with Tourette syndrome from Le Roy on the TODAY show and highly annoyed to see a neurologist attribute the problem to "conversion disorder." I have written an article that will be published soon in the medical journal Medical Hypotheses that argues that doctors should never make the diagnosis of conversion disorder. Doctors make a diagnosis of conversion disorder when they can't find the real cause of the problem. It's a cop-out and shouldn't be permitted.

Chances are good that the girls' problems are due to a simple problem with the temporomandibular joint, which is the hinge joint where the jawbone attaches to the skull. If the jaw is not in the correct position, it can irritate one of the cranial nerves, thus setting up a reflex arc that causes the movement problems.

In many cases, the problem can be solved simply and without drugs by giving the girl a dental appliance that holds her jaw in the correct position. The girl might be able to get longer-lasting relief from a simple surgical procedure to take a "tuck" in the articular disk in the temporomandibular joint, to put it back where it is supposed to be.

Here's an article from the Journal of Craniomandibular Practice about the problem.

http://www.tmjstack.com/casereport.pdf

Here's video of a patient with gait problems and all of the typical Tourette symptoms. Watch how rapidly the problems go away when the woman gets a dental appliance to reposition her jaw.

http://www.youtube.com/watch?v=5W7qBbjbRZ8

I wouldn't be surprised to find that all of the girls in Le Roy had the same dentist or orthodontist. That could account for why you've had an outbreak of Tourette syndrome in girls locally.

The Batavian has also received phone calls suggesting lead poisoning, mercury poisoning and telecommunication radiation.

Gary A. Goodwin, 51, of Hamlin, is charged with DWI and driving with a BAC of .08. Goodwin was reportedly involved in a motor vehicle accident at 11:12 p.m., Jan. 21, on Cockram Road, Town of Byron. The accident was investigated by Deputy Brad Mazur.

Rene Peres Roblero, 46, of McGregor Road, Corfu, is charged with DWI, moving from lane unsafely, operation by an unlicensed driver, operating without insurance. Roblero was arrested following the report of a one-vehicle accident at 11:24 p.m., Jan. 17, on Richley Road, Darien. He was jailed on $1,000 bail.

Debra G. Fields, 43, of 18 South St., Le Roy, is charged with unlawful dealing with a child, 1st. Field is accused of hosting an underage drinking party at her residence.

Uriah Ian-Charles Smoke, 27, of Bloomingdale Road, Tonawanda Indian Reservation, is charged with reckless endangerment, 2nd, and criminal mischief, 4th. Smoke was arrested on a warrant and jailed on $2,000 bail or $4,000 bond.

A two-car accident is reported in Le Roy on East Bethany -- Le Roy Road, between Munson Street and Cole Road.

No word on injuries. Le Roy Fire Department is responding.

UPDATE 12:06 p.m.: Le Roy Ambulance Service is on scene. Responders are told to come in non-emergency mode. The accident involved a utility pole.

UPDATE 12:10 p.m.: Traffic is being slowed to one lane, but the scene will clear very soon.

UPDATE 12:14 p.m.: Le Roy assignment is back in service.

Thomas J. Hutton, 28, 9624 Clipnock Road, Stafford, is charged with forcible touching and endangering the welfare of a child. Hutton is accused of forcibly touching/grabbing the intimate parts of a person under age 17 in October. In a separate incident, Hutton is accused of offering cigarettes to a child under 17 in exchange for a sexual act. Following arraignment, Hutton was placed under the supervision of Genesee Justice.

Carrie Quashaye Blunt, 19, of Batavia Stafford Townline Road, Batavia, is charged with petit larceny and unlawful possession of marijuana. Blunt is accused of shoplifting from Walmart. Blunt was taken into custody following an alleged verbal confrontation with a store employee. During the investigation, Blunt was allegedly found to have marijuana concealed in her purse.

A 29-year-old Genesee County resident with multiple arrests over the past couple of years could get up to five years in prison as part of a plea deal.

In county court on Thursday, Robert J. Eppolito, most recently of Church Street in Le Roy, entered a guilty plea to criminal contempt, 1st, with a negotiated prison term of one to three years.

Eppolito is also charged with assault, 2nd, for allegedly punching and kicking a person during a confrontation in September in Le Roy.

Public Defender Gary Horton, representing Eppolito on the assault charge, said a plea agreement is in place, including a plea on the criminal contempt charge, that could lock Eppolito up for a maximum of five years.

The two sentences -- for criminal contempt and for the alleged assault -- would be served concurrently.

Eppolito is expected in court next week to answer to the second-degree assault charge.

The cases are separated because they are unrelated.

In court Thursday, Eppolito admitted that he violated a court order by being with a protected person and by drinking alcohol.

Sentencing will take place at 9 a.m., April 23.

Eppolito is being held in the Genesee County Jail.

A doctor who has treated 11 of the 12 girls in Le Roy who have been suffering from tic symptons appeared on NBC's Today Show on Wednesday morning and shared their diagnosis.

It's "conversion disorder," or "mass hysteria," he said.

“It’s happened before all around the world, different parts of the world," said Dr. Laszlo L. Mechtler, of the DENT Neurologic Institute in Amherst (there's also an office in Batavia). "It’s a rare phenomena. Physicians are intrigued about it, but the bottom line is, these girls will get better.” 

The school district also released (though we have not obtained yet) a report completed in December by a private environmental testing firm that says, according to NBC, no possible environmental causes were found on school grounds or in school buildings.

Brooke Dupont, one of the 12 students who has suffered from tics, appeared on the Today Show, along with her father, Jim Dupont.

"Obviously, not all of us are accepting that this is just a stress thing," Jim said. "Our kids didn’t all get sick by coincidence. It’s heart wrenching because you feel that your daughter is not going to be able to have a normal life."

Brooke said that even though her symptoms have nearly disappeared, she is worried they might come back.

"It is really frustrating because I would like to know why this is happening and fix it," Brooke said.

UPDATE 8:40 a.m.: The school district's statement is here, plus a PDF of Indoor Air Quality Report and PDF of the Mold Report.

A two-car accident has been reported in the area of 87 Lake St., Le Roy, with one person having a possible leg injury.

The cars are blocking.

Le Roy Fire Department and Le Roy Ambulance Service dispatched.

UPDATE 9:14 a.m.: No injuries. Le Roy ambulance back in service.

UPDATE 9:38 a.m.: Le Roy fire back in service. Lake Street reopened.

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Two Le Roy High School students, with their mothers, appeared on NBC's "Today Show" on Tuesday morning to talk about the tic symptoms they've been experiencing and the response to the issue from state health officials.

The segment opened with a feature report on the two girls and what's been going on at Le Roy HS, followed by an interview with Ann Curry.

Thera Sanchez and Katie Krautworst, with their respective mothers Melissa Philips and Beth Miller, were on the set with Curry, along with Dr. Gail Saltz, a mental health specialist.

Curry opened by asking Thera if the situation made her angry, and she said it did, "and frustrated."

Curry asked Philips, Thera's mother, "When the state says there's no environmental factors, that there's no infectious disease, as a mom, what are you thinking?" 

"Where's the proof? Where's the data? Where's the testing? When has this been done?" Philips asked.

"You've not been shown any data?" Curry asked.

"No, nothing."

Miller said she's requested the data, "so we can find a cure for our daughters."

Curry: "Why do you disbelieve what the state is telling you, that this has to be something else?"

"Nothing's been done collectively for our daughters," Philips said. "Everything's been done individually. The testing they say they've had, they have not had. The facts they're stating are just untrue."

Thera said the only thing she's been told is that the tics are stress induced.

Katie said, "They told us that it was traumatic, but I don't think any of us had that traumatic of a life before and that it would randomly happen."

When Curry turned to Saltz, the doctor said that having just met the young women, she could not make a diagnosis, however, since environmental factors have been ruled out and infectious disease has been ruled out, that leaves psychological factors.

Saltz said it could be conversion disorder, which is something psychosomatic.

"It’s important for me to say that’s not fake," Saltz said. "They're  not faking it. They’re real symptoms that are not under their control, that they’re really experiencing. They’re psychologically driven and they need a psychiatric or psychological treatment and treatment does work."

Curry said, "but it's 12 girls," and Saltz started to say, "It can ..." but Curry cut her off and asked Thera what she wanted out of appearing on the Today Show.

"I want an answer and I want a straight answer," Thera said. "I’ve had psychological treatment. They say this is stress induced. (unintelligible) my psychological treatment, all that does is stress me out more and then I get worse."

Thomas J. Smith, 23, of 8048 E. Main Road, Le Roy, is charged with DWI, driving with a BAC of .08 or greater and criminal possession of a controlled substance, 7th. Smith was stopped at 2:12 a.m. Saturday on Lake Street, Le Roy, by Le Roy Police.

A 17-year-old of South Lake Road, Pembroke, is charged with unlawful possession of marijuana and possession/consumption of alcohol under age 21. The youth was allegedly found by Deputy Patrick Reeves to have concealed a quanity of marijuana and alcohol in a duffle bag during a traffic stop on Main Road, Pembroke.

Brandi Elizabeth Schmiedicker, 18, of Genesee Street, Darien, is charged with unlawful dealing with a child. Schmiedicker is accused of hosting an underage drinking party, which was reported through Tipline.

Paul M. Flis, 19, of Salisbury Lane, Blasdell, is charged with DWI and driving with a BAC of .08 or greater. Flis was allegedly found behind the wheel in a stopped vehicle on Genesee Street, Darien, at 4:19 a.m. Sunday, by Deputy Kevin McCarthy.

UPDATED 3:27 p.m.

Emergency personnel were dispatched Saturday night to an address on Gilbert Street in Le Roy for a report of a youth having a seizure.

Le Roy Ambulance and Le Roy PD arrived on scene and learned that the seizure victim had allegedly smoked "Hammer Head," advertised as "incense" and "not for human consumption."

While on scene, police took into custody Tyler F. Longhini, 20, of 12 Myrtle St., for alleged underage possession of alcohol with intent to consume.

Longhini reportedly agreed to a breath test and allegedly blew a .19 BAC.

Police report that Longhini admitted to consuming Black Velvet whiskey while in the parking lot of McDonald's in the hours prior to police being dispatched to Gilbert Street.

Longhini was issued an appearance ticket and turned over to his grandmother.

Officer Emily Clark said there were three people at the Gilbert Street residence who said they had smoked the "incense," but only one of them suffered a seizure.

She said one of the people on scene said that the "Hammer Head" was purchased at a retail store on the Tonawanda Indian Reservation.

The seizure victim was transported to the hospital by Le Roy Ambulance and the remaining "Hammer Head" product was sent with the patient for medical personnel information.

Clark said this is the first time she's responded to the scene of a medical problem allegedly related to consumption of puportedly synthetic marijuana; however, she has responded to the scene of medical situations involving so called "bath salts." She said she's heard that other members of her department have responded to similar cases.

The victim's name has not been released and we have no information on his or her condition.

Previously: Potentially dangerous synthetic drugs readily available in Genesee County