Le Roy

Dr. Susan Swedo, you could say, wrote the book on PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder). She is currently chief of the Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health. In 1998, Swedo wrote the first paper on PANDAS. Click here for her official biography.

In the course of working on the story of the Le Roy illness, we contacted NIMH about her possible opinion on the Le Roy cases and discovered -- something that should have been obvious -- she can't publicly discuss the cases. With that in mind, The Batavian sent her eight questions we thought might be relevant to readers, but did not specifically address any patients in Le Roy. Below are the questions and Dr. Swedo's answers.

1. Has there ever been a case of mass PANDAS previous to this situation in Le Roy?

Not to my knowledge. It would be unlikely, given that PANDAS requires both a genetic susceptibility to post-streptococcal autoimmunity and a particularly virulent strain of strep. There have been epidemics of rheumatic fever and Sydenham chorea (the neurologic variant of rheumatic fever). Sydenham chorea is the model disorder for PANDAS, so it is theoretically possible that such an outbreak could occur.

2. Before Le Roy, would the suggestion of a mass outbreak be something you would have considered likely or even possible?

If a mass outbreak of PANDAS occurred, it should follow the same rules as individual cases, in which boys outnumber girls by 3-4 cases to 1. So if you had 14 affected girls, you would expect to have at least 40 to 50 boys exhibiting symptoms at the same time.

3. A neurologist from Mayo Clinic posted a video on YouTube that said about 1 percent of children develop tics. Dr. Mechtler said getting PANDAS is as much of a long shot as winning the lottery. And then imagine 12 diverse people all selecting the same numbers and winning the same lottery -- that's how unlikely it is the Le Roy situation is PANDAS. Others have reported that PANDAS isn't rare at all (there was an article in Scientific America). Which is it, rare or not?

PANDAS is not rare, but it is not common either. Obsessive-compulsive Disorder (OCD) affects about 1 in 100 students and PANDAS is not the most common cause of OCD (That cause is currently unknown.). Among grade-school aged children, PANDAS may be responsible for a larger percentage of cases because the ratio of boys to girls is 3:1 before age 10, and then it switches at puberty so that becomes more common in girls than boys. Comorbid symptoms also differ by age with younger children frequently having a triad of OCD / ADHD (Attention-deficit Hyperactivity Disorder) and tic disorders, while adolescents and adults are more likely to have comorbid depression and/or anxiety disorders.

4. Is there anything about PANDAS that would make it more likely that mostly (all) girls would contract it?

See above. The opposite is true.

5. Is there evidence from previous cases of ties to environmental toxins?  What environmental causes might be tied to PANDAS, if any?

No environmental causes have been suggested.

6. What is the most common way PANDAS is contracted?

PANDAS is the result of an untreated strep infection. The strep bacteria “hides” from the immune system by putting molecules on its cell wall that look like the human host (molecular mimicry). These foreign molecules are eventually recognized as part of the infecting strep infection and the child’s immune system reacts to them, producing cross-reactive antibodies.

Cross-reactive antibodies are initially produced against a component of the strep bacteria but “misrecognize” a molecule in the child’s own body as foreign and “attack it." In the case of rheumatic fever, the antibodies recognize molecules in the heart and cause rheumatic heart disease, or in the joints and cause arthritis, or in the brain (particularly the basal ganglia) and cause Sydenham chorea. Some children with cross-reactive “anti-brain” antibodies don’t develop full-blown Sydenham chorea but develop PANDAS symptoms instead.

7. What about genetics might be related to a child getting PANDAS?

During the early 1900s, before antibiotic treatment was available for strep throat and scarlet fever, people would be quarantined for scarlet fever. Among the crowded tenements in NYC and Chicago, many people would get strep (scarlet fever or strep throat) but only one in 20 families would have a child who developed rheumatic fever. In those families, multiple children would often become affected with rheumatic fever and there are fascinating case reports of mothers with 10 of 11 children in the “Lying in” hospital (for rheumatic fever treatment) at the same time.

Those family histories are also present in PANDAS (increased susceptibility to rheumatic fever). In addition, the children have increased numbers of first-degree relatives with tics and/or OCD, suggesting that PANDAS may be due to a dual genetic vulnerability to post-streptococcal sequelae and OCD/tics.

8. The NIMH site says PANDAS can be contracted "to puberty," not "though puberty"? Is this a semantic difference or a significant difference? Is it known whether a child who has already reached puberty can contract PANDAS?

The PANDAS criteria were chosen to narrow the heterogeneity of OCD to a “studiable” cohort of patients. Puberty (or age 12 years) was chosen as the upper age limit because of immunologic evidence that about 98 percent of the population will have “immunity” to streptococcal infections by the age of 12 years. We know that cases can occur after puberty, (because outbreaks of rheumatic fever and Sydenham chorea used to be common among military recruits and college students living in crowded dorms). Thus, PANDAS was defined as a pre-pubertal disorder but can occur through and after puberty.

(Dr. Swedo says) Please note: PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) criteria use a less restrictive term of “pediatric onset,” which is variously defined as before age 18 years or age 21 years.

Some additional information (below) that may be of interest: (I apologize that it’s not already on the website. We’re hoping to get it up by the end of the week.)

What is the best treatment for PANDAS?

The best treatment for PANDAS is to treat the inciting infection if it's still present (with antibiotics if strep is the cause). If there is no evidence for a current infection, some physicians have reported success with a short course of antibiotics (presumably because there is an occult infection in the sinuses, nasopharynx or elsewhere). In severe cases, a single course of plasmapheresis or intravenous immunoglobulin (IVIG) has been shown to be helpful. Although I've learned of physicians having success with use of steroids for PANDAS, we did not test them because of reports of worsening of tic disorders on steroids. (And in our studies of Sydenham chorea, the steroids produced only a temporary reduction in symptom severity with rebound to pre-treatment levels or worse after the steroids were stopped.)

How are tics diagnosed?

Tics are a very specific movement disorder in which there is a "premonitory urge" (feeling that you need to move, almost like an itch that makes you scratch it) and therefore, they can be at least partially controlled by the ticquer. Tics increase in times of stress and decrease during rest for most people (but sometimes the opposite occurs). They tend to wax and wane in severity over the course of an hour, day and weeks. Some children also have flurries of tics where they'll occur frequently and then not at all for a few minutes or even several hours. The most important aspect of a tic is its partially involuntary nature, where patients can exert some control over the symptoms (except for minor tics like eye-blinking and throat-clearing, which can occur more automatically). In general, if the tics are immediately noticeable to others, they should be at least partially controllable by the person who has them.

Also, tic disorders (like childhood-onset OCD) are about three times as common in boys as girls, so if you had a "Tic Epidemic," one would expect to see 40 to 60 boys if 14 girls were affected.

How is PANDAS/PANS diagnosed?

The updated clinical criteria for PANDAS are as follows:

1) Presence of obsessive-compulsive disorder and/or tic disorder;

2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness");

3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.);

4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child):

      a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc);

      b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look";

      c. Motoric hyperactivity, abnormal movements and sense of restlessness;

      d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations;

      e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills;

      f. Urinary frequency and new onset of bed-wetting;

      g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation;

      h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms).

5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms).

FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component.

Press release:

At the Dent Neurologic Institute, Drs. Jennifer McVige and Laszlo Mechtler have had the privilege to examine and treat 14 of the 19 patients from Le Roy, NY. The diagnosis of Mass Psychogenic Illness (MPI) was not made without considerable input from regional and national experts. We understand the difficulty some of our patients and family members may have with our diagnosis, it is reassuring to see that most of our patients are improving significantly over the last several months.

Although we have not evaluated all the patients affected, we have considered many other diagnoses, such as PANDAS and neuro-toxicity due to environmental factors. With the cooperation of the New York State Department of Health and nationally recognized PANDAS specialists, we have ruled out these diagnoses.

We also feel that the media exposure has raised the national awareness of a rare form of conversion disorder, such as MPI, which has not been fully accepted or understood by the public as well as the many in the medical community. At the same time our primary responsibility is to our patients, who unfortunately have not done well with the intense community and media scrutiny. We do respectfully request that the media remember that we are dealing with impressionable teenagers who have understandable fears and concerns.

Although it is not uncommon to have a difference of opinion by treating physicians, I would respectfully request that the patients be treated not through the mainstream media but by credible experts specializing in the field of movement disorder. In this regard, multiple international experts have made themselves available for further consultation. We have strongly encouraged that our patients take advantage of this unique opportunity.

The statement was signed by Dr. Laszlo Mechtler, medical director of Dent, and Dr. Jennifer McVige, pediatric neurologist.

Statement:

Letter to the Community

The Leader Professional Services Final Recommendations Review is posted below and available through this link. Since there still appears to be some misunderstanding regarding whether we are committed to conducting soil testing, I would like to clarify that we are committed to conducting soil testing. As Leader presented at the meeting on Saturday, we will be conducting both air and soil testing but are doing so sequentially for the following reasons:

·      Indoor air sampling is the most direct method of determining whether the vapor intrusion pathway is complete and whether building occupants face a long-term health risk. Indoor air data integrates all contributing factors from the subsurface, above the ground, and the building itself.

·      The students are spending most of their time in the building so this is a good place to start for identifying any immediate situation we need to address.

·      If there are any harmful substances under the school building slab (in the soil or groundwater), the most likely pathway to the students would be through vapor intrusion and then inhalation by the students.

·      The results of the air sampling can provide a clearer road map on where we need to conduct our soil testing first and specifically what we should be looking for. 

·      Our air sampling is not just general air quality testing. Leader is specifically looking into the compounds and other environmental indicators that are of an immediate concern to our community.  

The District is pleased to announce that we have received good news from local and state officials. They are working hard to secure funding for the costs incurred by the District for the testing to be conducted at the high school by Leader Professional Services. Other private entities have contacted us regarding possible additional financial assistance and we will be pursuing all such resources.

Finally, as you may be aware, Robert Bowcock sent a letter to me on February 6, 2012, and simultaneously sent the same letter to the media. Given this, I have no choice but to publically respond, as this matter must be put to rest so that we can proceed forward with review and sampling outlined by Leader Professional Services and return our focus to the education of our students. As Superintendent of Schools, it is my responsibility to protect and lead this District. In conjunction with our Board of Education, I make decisions as to appropriate action and response to numerous matters. We did just that here.

Understanding in December that despite the findings of the Department of Health and private medical professionals, we needed to provide further reassurance to parents about this situation, we had initial environmental testing conducted. After consultation with trusted advisers and a review of credentials and experience, we then retained Leader Professional Services to analyze the preliminary testing results and provide further recommendations.

All of this occurred prior to the time that we became aware of Ms. Brockovich’s interest in this situation through an interview she gave on the HLN network on Jan. 27 and prior to Mr. Bowcock appearing, without notification to us, but with a camera crew from HLN in tow, at the District on Saturday morning, Jan. 28. Their public entrance into Le Roy has not altered how the District has proceeded with this matter to date or how it will proceed moving forward.

As you can see from the thorough and thoughtful plan set forth by Leader Professional Services, we are working with an experienced, reputable company. As a District, we are not in need of Mr. Bowcock’s direct involvement, nor the involvement of others by whom we have been contacted, albeit their contact has not been made in such a public way. Certainly, as they deem appropriate, if those individuals or entities wish to provide us with relevant information they believe would assist our efforts, they may do so.

Just as with almost every decision we as a District make, I recognize that some have alternate views as to how we should proceed. All I can ask at this point is that people recognize that our decisions are made always with the best interests of our students and the school community at large as our primary focus and only after careful, reasoned thought.   

Kim M. Cox
Superintendent of Schools

Additionally, the district posted a PDF of Leader's report on their testing plan.

In previous reports. Dr. Laszlo Mechtler has said Dr. Susan Swedo has indicated she would issue a statement confirming the conversion disorder diagnosis for the Le Roy teens with tics.

We attempted to contact Dr. Swedo for such a statement and were referred to the press office for the National Institute of Mental Health, a government agency.

We just received the following statement from NIMH:

The information you have from Dr. Mechtler regarding Dr. Swedo is incorrect. Dr. Swedo has not evaluated any of the patients so therefore cannot confirm any diagnosis.

A girl from Le Roy who is friends with five of the other girls who developed tic symptoms is now being treated for conversion disorder by the Dent Neurological Institute, according to Dr. Laszlo Mechtler.

That makes 19 official cases, with 17 of them being Le Roy High School students.

"Her parents agree with our diagnosis," Mechtler said.

He said there are possibly other doctors seeing other patients who do not want to go on the record.

With the aggressive media coverage and "continued hysteria" around the situation, Mechtler said, it's possible new patients may be afflicted, at least until the situation quiets down.

Mechtler recommended that any parents who are concerned their children could be susceptible to conversion disorder, "take away the social media and segregate them from friends who may be afflicted."

It isn't surprising, according to Dr. Laszlo Mechtler, that a doctor from New Jersey who makes a living diagnosing PANDAS came to that conclusion today in the Le Roy illness case.

Dr. Rosario Trifiletti appeared on the Dr. Drew television show tonight and also released a statement saying that "five of eight girls show evidence of carriage of streptococcus pyogenes and seven of eight show evidence of infection with mycoplasma pneumonia."

"This is what everybody expected him to do," said Mechtler, who is part of the team at Dent Neurological Institute who diagnosed the girls with conversion disorder.

Mechtler added that Dent's physicians stand by their original diagnosis and added that other experts are ready to step forward -- including Dr. Susan Swedo, the first doctor to write about PANDAS -- to support the conversion disorder diagnosis.

"There are enough experts ready to basically dispute his allegations," Mechtler said.

In his statement tonight, Trifiletti expressly refuted the conversion disorder diagnosis.

On the Dr. Drew show, Drew Pinsky asked Trifiletti if he consulted with Mechtler, and Trifiletti said flatly, "no," and said there was no plan to consult with him.

In a tsk-tsk moment, Pinsky said it's bad for patients when "competing" doctors have differing opinions.

PANDAS is most often associated with what's called a "vaccine injury," when a child gets an infection from a vaccine. But Trifiletti made no mention of vaccines as a cause in either his appearance -- by phone -- on Dr. Drew, nor in his written statement.

"As with most illnesses, there is a complex interplay of genetic and environmental factors here," Trifiletti said. "As with all illnesses, psychological factors likely play some role as well. All we have done here is provided evidence for exposure to two infectious agents as potential environmental factors."

Prior to Trifiletti's statement, Mechtler predicted that Trifiletti would tie the infections to a possible environmental cause, calling it "dangerous" for the community.

"That he is saying this is a PANDAS weakness, related somehow to an environmental toxin, is only going to tie it back to Erin Brockovich," Mechtler said. "This diagnosis is going to be huge for these guys."

There are two views of Brockovich, Mechtler said. One is that she wants to do good for the community and the other is that maybe she's more focused on a lawsuit and making a name for herself.

Or, maybe, he said, the truth is somewhere in between.

"I don’t know her and I won’t judge her," Mechtler said "I want to think the best of people and believe the perspective that she wants to help these people. But if they say it's PANDAS and TCE, there's going to be lawsuits."

Trifiletti said his diagnosis didn't answer all of the questions people have, such as why now, why in this town, why a particular child and not another, but that "infectious exposure is simply 'the straw that broke the camel’s back.' "

On Dr. Drew he said, "I think (streptococcus) is one of the main factors and the most easily reversed factor. I already started talking to families about a treatment based on this."

Trifiletti said he was recommending a regime of antibiotics and anti-inflammatory agents, and Mechtler said the prescriptions will work for the patients, if they believe in Trifiletti.

He compared the treatment to a placebo effect and a religious ceremony. Since conversion disorder is a psychogenic illness, if the patients are hyped into believing a treatment will work, it will work.

And if that's the outcome, that's a good thing, Mechtler said.

"At the end of the day, all I want is to see the patients get better," Mechtler said.

Beth Miller, the mother of one of the original 12 girls, told Pinsky that it was easier to accept the PANDAS diagnosis than conversion disorder because her daughter, she said, is a normal, healthy girl who doesn't have any stress in her life.

Drew asked Miller about a series of operations she has apparently had and whether that was stressful for her daughter, and Miller admitted, "I'm still sick."  Pinsky then turned his attention to another guest on the show.

The state DOH report said all of the original 12 girls had suffered significant stress in their lives, and Mechtler said over the weekend that the stress for some of the girls at some point in their lives is "everything you could imagine and worse."

Mass psychogenic illness refers to passing of one symptomatic behavior from one person to another. While not all 12 girls originally knew each other, there is a chain of connection among all of the patients diagnosed with conversion disorder.

After the jump (click the headline to read more) is the full statement from Trifiletti:

I have now had the opportunity to review laboratory data collected in standardized fashion on eight of the nine girls I examined in Le Roy, NY, on 1/29/12. Five of eight girls show evidence of carriage of Streptococcus Pyogenes and seven of eight show evidence of infection with Mycoplasma Pneumonia. All eight girls tested show evidence of infection with at least one of these pathogens. Both of these agents have been associated with a PANDAS-like illness with the sudden onset of motor and vocal tics. Thus, a PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder.

These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the cluster will remain a mystery. I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply “the straw that broke the camel’s back." However, the infectious exposure points the way to rational medical treatment for these children, which is of immediate importance. Such treatment, which involves antibiotics and anti-inflammatory agents, has already begun. Clearly, response to such treatment will be helpful in supporting my working diagnosis.

As with most illnesses, there is a complex interplay of genetic and environmental factors here. As with all illnesses, psychological factors likely play some role as well. All we have done here is provided evidence for exposure to two infectious agents as potential environmental factors. I would encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.

Angelo A. Cassidy, 35, of Lewis Place, Batavia, and 59-year-old Charles R. Gay, of Hemlock Ridge Road, Medina, are charged with petit larceny and conspiracy, 6th. Cassidy was reportedly employed by a business on Angling Road, Corfu, and allegedly falsified a weight ticket, allowing Gay to collect  money for scrap that was not actually part of his load. Cassidy and Gay are accused of making an arrangement regarding the money. The case was investigated by Deputy Chris Parker.

Carolyn M. Hooten, 29, of 12 Myrtle St., Le Roy, is charged with DWI and several traffic violations. Hooton was stopped late Friday evening on Myrtle Street by Le Roy Police.

Mathew Duncan Brew, 33, of Freeman Road, Byron, is charged with DWI, driving with a BAC of .08 or greater and failure to yield right of way. Brew was arrested by Deputy Brad Mazur following a traffic accident at 9:24 p.m. Saturday at Route 262 and Bank Street Road.

Donovan Michael Zandi, 22, of Campbell Boulevard, Getzville, is charged with DWI and driving with a BAC of .08 or greater. Zandi's vehicle was reportedly found by Deputy Kevin McCarthy at 2:59 a.m., Jan. 26, on Countyline Road, Darien, with four-way flashers on.

Kara Ellen Wojkowski, 28, Hall Road, Holley, is charged with grand larceny, 4th. Wojkowski is accused of stealing a motor vehicle on Oct. 25. She turned herself in at the Sheriff's Office on a warrant for her arrest. Following arraignment in Byron, she was jailed on $2,000 bail.

Kathryn L. Johnson, 24, of 20 Hutchins St., lower, Batavia, is charged with two counts of criminal possession of a controlled substance, 7th, criminally using drug paraphernalia, 2nd, and unlawful possession of marijuana. Johnson was arrested following a visit by County Probation to her home and jailed on $1,000 bail.

Bob Bowcock, lead researcher for the Erin Brockovich team, said he feels like there are still too many unanswered questions for him to walk away from further investigation in Le Roy.

He's coming back, probably with Brockovich, the week of Feb. 20 to continue digging for information and possibly take part in a town hall meeting with Brockovich.

"I've got to finish what I started because there are basic questions that have gone unanswered," he said.

Bowcock said his biggest area of concern are the gas wells on school property. He hasn't been able to get basic information from the school district about the wells and the gas that's being used in the school.

"Is there mercury in the gas? I don't know," Bowcock said. "If there isn't, then case closed (regarding gas from the wells)."

He said one easy way to get the answer is to look at the MSDS (Material Safety Data Sheets), which he said are public record and should be kept in a binder at the school. So far, he said, the district hasn't been willing to share those sheets with him.

When a reporter asked Saturday about the sheets, Superintendent Kim Cox said the sheets would be posted on the district's website.

Cox also said gas from the wells isn't used in the high school. Rather, it is used at the other district buildings at Trigon Park and Wolcott Street.

Bowcock acknowledges the DOH report on the outbreak of tics among 16 students at the school included information on a search of published medical reports that found only one case of mercury-induced tics.

The main thing Bowcock said he wants to do is get answers to questions and provide the community with information.

"About 50 percent of what we do is point people in the right direction," Bowcock said. "About 25 percent is education and empowering people to ask the right questions."

As for looking for a reason to file a lawsuit, as some have speculated, Bowcock said, "That's just not what we do."

He also said during his entire career with Brockovich, they've never been involved in a lawsuit against a public entity.

"We go after polluters, and big ones," Bowcock said.

There are questions Bowcock would still like answered about the school, such as: Was fill dirt used? Is the school built on a swamp? (He hadn't seen The Batavian's report dispelling that myth.)

These questions could be answered easily by the school district if the district would just release the reports he believes are on file about construction of the school.

If fill was used, he said, there would be a report on the origin of the fill. There should be reports readily available on soil tests prior to construction of the school.

At Saturday's meeting, Mary Ellen Holvey, senior industrial hygienist for Leader Professional Services, said her team reviewed a Level 1 environmental report prepared prior to construction of the school.

That report is now available on the district website. The report confirms the school itself is not built on a swamp, but there were unregistered wetlands to the north and south of the site.

In 2000, when the report was prepared, no environmental waste was known to be within a one-mile radius of the site. And though there had been an oil spill at 9200 South St. Road, the DEC determined the spill was properly cleaned up.

The report found no preexisting environmental problems on the site.

Bowcock said he's still trying to gain permission to do testing at the school and said an assertion by Cox that Bill Albert, with the law firm Harris Beach, asked Bowcock for a sampling plan that he hasn't submitted was inaccurate.

Albert, he said, is supposed to get back to him on his request for "a seat at the table" with Leader on what testing should take place.

"We need to at least have conversation, or we're just shooting in the dark," Bowcock said.

He said one thing that has hampered his efforts is the media misreporting the purpose of this trip to Le Roy a week ago. He said he wasn't there to gather soil samples. He carried a spade just be able to move dirt, rocks and brush to make visual inspections. The purpose of the trip was to do a first reconnaissance on the topography and check sites of possible contamination that people recommended he check.

He took three water samples, he said, just because he had the kits with him and was given permission to take the samples, but that wasn't a primary part of his mission.

The Lehigh Valley Derailment Site is an example of the kind of site he was asked to check out, and though he doubts the site is connected to problems at the school, he wants to know more about it and more about the TCE plume created by the wreck.

He isn't convinced, he said, the plume is moving exactly as the EPA has described it. If he's right, there may be area residents who are on well water when they should be on municipal water.

"You've got the largest TCE spill in the federal system and they forgot about it," Bowcock said. "I realize they have 15,000 sites, so I could understand them losing a few, but not the big one."

While Bowcock isn't beating the drum for an environmental cause, he does want to ensure that all environmental causes have been ruled out.

He doesn't agree with Cox that an environmental cause wouldn't discriminate.

He noted that Brockovich is allergic to sulfur and has a reaction whenever they go onto sites with sulfur, but sulfur doesn't bother Bowcock.

While saying it is outside of his specialty to talk about medical conditions, he questioned Cox's expertise to make such a statement.

"Environmental things do discriminate and they discriminate based on our individual genetic makeup," Bowcock said.

And with that in mind, he said he wants to finish his work in Le Roy.

"I feel a responsibility to close it properly," Bowcock said. "If it takes six days, six weeks or six years, it is what it is."

More documents from the school district:

• Summary of Leader's recommendations
• Derailment plume map
• Lehigh reference map

UPDATE, Monday, Feb. 6, 12:56 p.m.: Le Roy Superintendent Kim Cox emailed the following response to Bowcock's statements. These two paragraphs are from an email discussing other matters.

I also wanted to clarify some misinformation contained in your recent article. Mr. Bowcock has contacted the District only twice, once through Bill Albert with a voice mail after hours on Wednesday evening and Bill responded on Thursday. At that time, he was invited to submit his work plan for testing and told it would be passed on to Leader, our environmental consulting firm, to take under consideration. Mr. Bowcock told Mr. Albert that he would not submit a work plan.

The second contact by Mr. Bowcock was a letter sent to me through an email late Friday afternoon requesting permission to attend our community meeting on Saturday. I responded through an email that he was welcome to attend the meeting, and I also let him know that I understood he declined to submit a work plan but if was reconsidering to let us know.

He obviously chose not to attend our meeting and I have not heard from him since that time. To be clear, he has not made any additional requests for information from the District, so I am puzzled by comments that he made to you that the district has been unwilling to share the MSDS sheets with him.

As we stated in our community meeting when asked about the MSDS sheets, we said we would post them to our website. Because we are required to maintain MSDS sheets for 30 years, there are many documents. We are working as quickly as we can to sort through those documents to separate the ones related to the high school so people have the relevant information. These will be scanned and posted as soon as that process is completed. In addition, these documents are public record so anyone who chooses can request seeing all of the MSDS sheets.

UPDATE Monday, Feb. 6, 1:36 p.m.: Bob Bowcock released a letter he's written to Kim Cox (PDF). (Note: this actually arrived in my inbox before Cox sent the email referenced above, but I didn't notice it until after posting the above update.)

The girls who are continuing treatment at Dent Neurologic Institute are getting better, according to Dr. Laszlo Mechtler.

The girls who have been influenced by media hype and discontinued treatment aren't doing as well, Mechtler said Saturday evening in an exclusive interview with The Batavian.

"The ones who are not appearing on TV are getting better," Mechtler said. "The ones who are on TV are getting worse or staying the same."

Of the original 12 girls who were part of the first group of patients suffering from tic symptoms at Le Roy High School, 10 sought treatment at Dent, two didn't, and some have broken off treatment, Mechtler said. Of the 18 patients that doctors are aware of, 14 have been to Dent.

But even for the girls continuing treatment, erroneous and sensational media reports are not helping them, he said.

The girls see reports about TCE and national personalities proclaim, "Oh, my God, we can save thousands of lives," and going so far as suggesting bodies being exhumed from cemetaries for investigation, and the girls take such reports to heart, Mechtler said.

"We had six or seven girls who were doing so much better, but after the media reports, in three weeks time, they're in my office crying, 'this chemical is in my head and I'm damaged for the rest of my life,' " Mechtler said.

When media reports haven't focused on environmental issues, the other issue to spring up has been PANDAS (aka, PANS), and Mechtler said PANDAS was ruled out as a cause of the tics for some very specific reasons.

First, and even though some physicians disagree, PANDAS is very rare.

Imagine your chance of winning the lottery, according to the analogy used by Mechtler. What are the odds? Now imagine you and 11 associates all independently picking the same numbers and winning the same drawing.

That's how unlikely it is that the original 12 girls suffered from PANDAS, according to Mechtler.

And that's all dependent on PANDAS even being a real disease, which not all medical officials agree on either, Mechtler said.

The other thing the media hasn't known when reporting on the subject, Mechtler said, is that Dr. Susan Swedo, who first described PANDAS in 1998, consulted with Dent on the Le Roy 12. She also concluded PANDAS wasn't the issue and has agreed with the conversion disorder diagnosis.

Mechtler said he's been told that Dr. Swedo will appear on a syndicated television show either Monday or Tuesday and confirm her support of the conversion disorder diagnosis.

From the beginning, Mechtler said, the media have failed to properly understand conversion disorder and have drawn on erronenous information about environmental and infectious causes to sensationalize the story.

That hasn't been good for his patients, he said.

"In conversion disorder, the worse thing you can do is interview these teenagers and reinforce the disorder and increase their stress," Mechtler said.

He explained that conversion disorder is far more common than people realize or the media has reported.

The media have also misreported -- and some people have misstated -- that conversion disorder is a diagnosis that can only be reached after all other possible causes have been eliminated, calling it a "diagnosis of exclusion."

He said a good neurolgist will recognize conversion disorder on the first consultation with a patient.

He used the example of hysterical blindness, which is a form of conversion disorder. If a patient claims blindness and the neurologist suspects conversion disorder, all a doctor needs to do is put his hand in front of the patient's eye and track the patient's involuntary eye movement. There's no need for environmental or infectious disease tests to arrive at the correct diagnosis.

It's the same with just about any diagnosis of conversion disorder. The initial exam will tell a physician a good deal about what is going on with a patient.

What's unusual in the Le Roy case is that so many people have come down with the same symptoms -- 16 students, plus one adult in Le Roy and one person in Greece.

In that regard, the Le Roy situation falls into the category of Mass Psycogenic Illness.

The illness began with an index case, a girl who already had Tourette Syndrome, but in October, after suffering a head injury, developed more pronounced tics.

One fact the media have repeatedly misreported, Mechtler said, is that the girls involved don't know each other.

The girls, along a chain of connections, are woven together, Mechtler said. One healthy girl spent the night with a girl who had tics and the next morning, developed tics, for example.

"The networking here among these girls is far more intensive and far more complex than the media is aware of," Mechtler said.

Bullying has also played a part in excerbating and spreading the disorder, Mechtler said.

"We have known some bullying is going on," Mechtler said. "This bullying has occured prior to symptons occuring and since that time, some of the bullying may have increased. Bullying is another form of stress inducer among young people."

When it comes to stress, Mechtler said, reporters who have focused on environmental issues and downplayed the role of stress in conversion disorder have no idea of the amont of stress the original 12 girls went through prior to developing symptons.

Mechtler said he can't discuss examples, but he said in every case, the life stressors uncovered for each of the girls have been incredible.

"In some cases, it's everything you could imagine and worse," Mectler said.

If anything good can come of the Le Roy case, Mechtler said, it's that it opened an opportunity to better understand conversion disorder, and the national media coverage has introduced many people to the illness.

"A lot more doctors and a lot more patients are going to be more comfortable with the diagnosis," Mechtler said. "A doctor can say, 'You've got conversion disorder like they had in Le Roy,' and the patient is going to be more accepting."

Because conversion disorder is an illness that not many people have known about, even though it is very common, Mechtler said, it's been a very difficult illness to tell patients about.

"How hard is it to tell a patient who is scared and upset, 'I've got good news. Your symptoms are all in your brain,' " Mechtler said. "It's difficult to tell a mother or father that it's all in their child's head. They have a hard time accepting it. It's like you can have a patient who comes in who has had headaches for three weeks and after I finish the examination I say 'It's all stress related' and the person looks at me and says, 'It's not a brain tumor? I don't believe it.' Some times people don't want to believe the good news that it can be treated."

Mechtler said doctors still don't know as much as they would like to about the disorder.

One benefit of the Le Roy case is that several of the patients have agreed to  specialized functional MRIs so that their brain scans can be compared to people without conversion disorder and perhaps neurologisist will learn how the brain changes in relation to the disorder.

"Maybe we can get more information out of this bad thing, and maybe something good can come of it," Mechtler said.

Two scientific papers Mechtler referenced during our conversation:

• Moving from PANDAS to CANS
• Streptococcal Upper Respiratory Tract Infections and Exacerbations of Tic and Obsessive-Compulsive Symptoms: A Prospective Longitudinal Study

UPDATED Sunday morning to improve some writing, add a couple of facts left out and clarify a statement or two.

On a poster in the library at Le Roy High School is a quote from Sherlock Holmes: "When you have eliminated the impossible, whatever remains, however improbable, must be the truth."

While a state report issued Friday, ennumerates specific reasons there are no environmental or infectious causes behind 16 students developing tics since the fall, there are still doubters.

Many of those doubters were at a community meeting Saturday morning at Le Roy HS, some even getting quite angry.

The meeting demonstrated that Le Roy has become a divided community. Speakers who backed, or seemed to back, the conversion disorder diagnosis were applauded by one group of people. The people who demanded more testing and accused Superintendent Kim Cox of not doing enough to protect their children were applauded by another group of people.

The meeting was called to introduce the media and the community to the staff of  Leader Professional Services, with primary offices in Rochester and Buffalo.

The morning began with a press conference, then the public meeting, and then Cox took more media questions after the meeting.

Mary Ellen Holvey (top inset photo), senior industrial hygienist for Leader, presented about a dozen slides (audio link below) outlining the testing and environmental data gathered so far and what additional testing will be done.

Leader is beginning with more air quality testing because, Holvey explained, the results will help researchers determine what soil testing might be needed and where to do the testing.

Any contaminants in the soil, Holvey explained, will manifest via thorough air testing.

Soil testing must be done in a methodical manner, according to Leader staff. It involves a grid-pattern plan, specialized equipment and constant sterilization.  One researcher noted, you don't just show up with a spade from home depot and start digging.

While Cox didn't have the information available to discuss how much the new round of environmental testing will cost taxpayers, she said it was necessary, "because it is clear to us that our community needs more reassurance."

The environmental testing conducted in December by a researcher with BOCES should still be considered valid, Holvey said.

"The methods he used were appropriate," Holvey said. "His results were valid. I don’t disagree with his results. We’re just doing a broader-based investigation."

Cox repeated three times during the course of the morning, "Environmental causes are not going to discriminate."

"If we had an environmental cause here, we would see this in a wide spectrum of folks (effected)," Cox told the press. "We wouldn’t see just adolescent girls. We would see adults. We would see children and we would probably see a very different kind of condition."

After Holvey made her presentation, the mic was open for questions.

It didn't take long for the shouting to start.

Melissa Cianci stood up and yelled at Cox, "This school is not safe. You’re not doing anything. You’re not doing your job. You’re not doing your job.  You’re supposed to care for our children, and you’re not."

Cianci (photo, second from the bottom), tried to encourage parents to pull their children out of school until officials prove it is safe.

More than once Saturday morning, Cox said the school is safe.

Some people in the audience applauded Cianci.

Others applauded people like Tom Frew, who spoke of his daughter, who was diagnosed with mental health issues as a child and is now an educated mother and doing well.

"Try to keep your emotions under control and remember what this is all about," Frew said to parents of afflicted children. "I believe in time – it may not be next week; it may not be in the next thee weeks -- but I believe this situation will improve with your own kids."

Cox was applauded when she said, "There is so much misinformation and speculation and erroneous facts that are traveling at the speed of light. They have caused great concern and distracted us from our main mission, which is that we want our students to get better and get back to peace and normalcy. We want to assure our community that our school is a safe place to be."

About dozen people, of the many who applauded, stood as they clapped after Cox defended keeping Bob Bowcock, a researcher for Erin Brockovich, off school property a week ago.

"I think you can appreciate that we would not want just anybody to show up and just do and start digging in the ground," Cox said. "That isn’t the strategic way you do this. Reputable companies are going to go through a process.

"They need to have the background of where we’ve been and be able to map out where we need to go, otherwise we could end up missing something that is very important, or getting parts of information and not really getting a clear picture. That’s why we wanted to go with a company that has a plan for us."

Cox said school spokesman Bill Albert has talked with Bowcock and invited him to submit a plan for environmental testing to be done side-by-side with Leader, but so far, she said, Bowcock has refused to participate in such a protocol.

During the pre-meeting press conference, a journalist asked about reports of yellow ooze spotted on the athletic fields.

Cox explained that the district has learned that the yellow substance is something common to Kentucky Bluegrass sod. It's a fungus that other schools and local homeowners have experienced.

But no parents or students had ever mentioned the yellow ooze until the national media got involved.

"I got an email from California from USAToday saying, 'What’s the yellow ooze on your fields?' " Cox said. "I sent out my buildings and grounds person to look for it because we didn’t know what they were talking about.  Then we talked to some of the community members and they said, ‘Oh, sometimes when we’re out playing soccer sometimes it shows up on our shoes.' So then we researched it and found out what it was. When people ask a question, we’re going to research it and we’re going to find the answer."

There were a few questions about supposed hydrofracking at gas wells on school property, and Holvey said Leader will develop a plan for environmental testing related to the wells.

There was reportedly a spill of brine, used in hydrofracking, at a well during the summer.

In WNY, brine is the common term for salt-treated water spread on roadways to help melt ice, but in the gas industry, brine can also include barium, cadmium and chromium.

In the morning press conference, some reporters focused on dead trees and grass near a well, apparently unaware that brine, even industrial brine, contains high concentrations of salt, which is fatal to vegetation.

When a self-proclaimed environmental journalist got up to speak at the community meeting, and insisted that the school hadn't adequately addressed the brine issue, some audience members applauded his statement.

A DEC report previously found no violations related to the brine.

With so many parents still upset and concerned about whether the problem is being adequately addressed, Cox told the media after the meeting that she understood their attitudes.

"They are parents," Cox said. "These are their babies. Of course they are going to do whatever they can find an answer that is tangible and that they can fix. When it’s something that is being presented to them that’s unusual or different or a little more difficult to understand, then that (revelation of the diagnosis) is a natural reaction. Then when they're presented with a lot of information, some accurate, some inaccurate, some exaggerated, and there’s so much confusion around it, they're going to get emotional. I don’t blame people for loving their children."

Audio: Mary Ellen Holvey discusses the environmental testing plan (mp3).

After the press conference and meeting in Le Roy this morning, I decided to swing by the Lehigh Derailment Site on Gulf Road.

When I arrived, a group of workers were leaving, helped by a staff member in a hazardous waste suit (bottom photo).

A local resident came by and we chatted for awhile, and then a deputy stopped and we said hello, and about the time I was ready to leave, Rep. Kathy Hochul showed up with local officials.

All of that to say -- I didn't know Hochul would be there and she didn't know I would be there. This wasn't an arranged media event, and Hochul expressed some sensitivity to leaving that impression.

Hochul said she was passing through Le Roy, had stopped at D&R Depot for a meal, and decided she should visit the Superfund site.

"I'm committed to working with local officials and seeing what we can do to help," Hochul said. "I want them to know they have a partner and come to us when they want answers."

Without naming either Erie or Niagara counties, Hochul said any speculation about where the drums of material stored at the site are to be relocated is "premature."

"The EPA hasn't made that decision yet," Hochul said.

Evidence of stepped-up work at the site: In the top photo, there is a red Dumpster inside the fenced area on the left that wasn't there a week ago. There are three new drums at the front of the fenced-in area. In the bottom picture, there is a trailer for heavy equipment on the left side frame that wasn't there a week ago.

Officials continue to keep members of the media as far from the site as possible.

A story is coming about this morning's meeting in Le Roy.

Three of the original 12 students who displayed tic-like symptoms at Le Roy High School had preexisting conditions, according to a report released today by the NYS Department of Health.

One of the students had previously been diagnosed with Tourette's Syndrome and suffered an acceleration of symptoms during the onset of the 12 cases.

The other eight students were diagnosed with conversion disorder.

Three more students have been identified since the DOH started preparing its report.

The age range of the students is 13 to 19.

From the report, "All 12 students were evaluated by Work Fit Medical and eight of the 12 were evaluated by DENT Neurologic Institute."

Two of the three students with preexisting conditions had been tic free for some time, but experienced an exacerbation of tic symptoms during this time period.

Of the original 12, significant life stressors were identified in 11 patients.

One of the original 12 students did not seek medical treatment.

The report goes into some detail on the investigative process the DOH went through to examine the case.

As part of the environmental evaluation, the DOH states it, "consulted with the United States Environmental Protection Agency (EPA) regarding the Lehigh Valley Railroad Derailment Superfund Site and reviewed information pertaining to the Lapp Insulator and Target Products sites to determine the potential for spread of contamination to the school campus."

It also states:

Interviews of the 12 cases did not reveal any common environmental exposures, other than attendance at the same school. The occurrence of symptoms in only female students and the range of time of symptom onset are not consistent with an environmental cause.

An exhaustive search of prior reports of environmental contamination causing tic disorders showed only a couple of cases worldwide, according to the report.

As for infectious causes, the 12 students did not have common experiences to explain an infectious onset.

"Drug use was ruled out based on interviews with all the cases, and toxicology screens on seven of the cases," states the report.

Seven students received Gardisil.

"Six of seven cases who received Gardisil had onset of tic symptoms greater than one year after their last dose of vaccine," states the report.

According to the report, none of the cases were consistent with PANDAS.

The report also states:

A post-licensure safety study of HPV vaccine among 189,629 females completed by an independent safety team of experts, identified no association between vaccination with Gardisil and neurologic disorders

In its conclusion, the report states:

The healthcare providers and public health agencies involved in this investigation consider this cluster of cases to be the result of conversion disorder/mass psychogenic illness.

...

While outbreaks of psychiatric or neurologic disease without clear explanation are unusual, similar cases have been documented (11-14). The conversion disorder/mass psychogenic illness conclusion is based on individual medical evaluations, the presence of significant life stressors, and demographic characteristics of the cases. It is uncertain what role conversion disorder played in the recurrence/acceleration of symptoms in the three cases with preexisting medical conditions.

The report encourages families of affected children to continue individualized care with their treating physicians.

Read the full report (PDF).

The Le Roy illnesses may not have one single cause, according to a Tennessee health official who has seen this kind of thing before.

Dr. Timothy Jones, state epidemiologist for the Tennessee Department of Health, was lead author of a paper for the New England Journal of Medicine examining an outbreak of an illness in 1998 at a high school in McMinnville, Tenn.

It turned out, for at least 90 percent of the cases, there was no environmental cause for the illness, which in this event included rashes, vomiting, nausea and headaches. Some of the people involved just happened to be sick at the time of a rumored gas leak and one girl turned out to be pregnant, causing morning sickness, though she didn't know it at the time.

The diagnosis -- which was hard for the community to accept -- was psychogenic or sociogenic illness.

For most of the sick kids and teachers, the illness was a matter of adopting symptoms from people around them.

Jones hasn't been involved in the Le Roy case and only knows about the situation thorough media reports, but he said there are some similarities to the Le Roy and McMinnville situations.

• Most of the patients are adolescent and disportionately female;
• The groups tend to know each other or be socially related;
• There is a line-of-sight transmission or direct knowledge of a previous patient's symptoms;
• There is no other apparent medical explanation for the illness.

There are also some things, Jones said, that are not entirely classic psychogenic in the Le Roy situation.

Most importantly, in most psychogenic cases, the symptoms are short lived. They usually involve dizziness, fainting, vomiting and rapid heart rate, for example. The symptons usually disappear when patients are separated.

In the McMinnville case, for example, after the initial outbreak, everybody went home for the weekend and were fine until they returned to school on Monday.

Typically, Jones said, these kinds of outbreaks start with one person who has an actual physical problem -- the student becomes woozy or the choir member who faints -- but over the course of the illness spreading, additional cases may be psychogenic or there may be infectious or environmental causes for some patients.

In the Le Roy case, it's possible, if not probable, that the the initial student with a tic sympton -- the trigger case -- has a non-psychogenic disorder.

One of the problems public health officials have in such a situation is explaining who might be ill because of an infectious or environmental condition and who might be showing psychogenic symptoms.

HIPPA prevents officials from discussing a specific patient diagnosis.

While a public state health official might be able to talk about a diagnosis for a group of patients under HIPPA, Jones said, the doctor who has actually treated the patients is prevented by HIPPA from discussing the cases, even as a group, because that could lead to public knowledge of individual diagnosis.

"No matter what, these are incredibilty senstive things to discuss and there are good reasons for that," Jones said. "When you have the word 'psych' attached to any conversation or diagnosis, people think they're being told they're crazy, or they're faking it or they're malingering. It's a hard thing to convince them and other people reading about it that it's real. The symptoms are real."

Jones said actual mass conversion disorder is a very rare thing and he knows of only two such cases in recent history, one in Colombia and one right in Tennessee.

In the Tennessee case, girls at a closed religious community stopped eating and were suffering severe weight loss.

"It certainly can happen, but it's at the severe end of the spectrum for sure."

Public attention doesn't help matters, either, Jones said.

While things like a lot of ambulances and fire trucks showing up at a school can spread an outbreak of psychogenic illness, so can the appearance of the media, and reports in the media reinforce the message of an illness spreading.

Getting people to accept the diagnosis is very difficult, Jones said.

In the McMinnville case, self-proclaimed experts and actual experts from all over the country were popping up with test suggestions and ideas for investigation.

In all, public health officials ended up spending close to $100,000 trying to find an environmental cause for an illness that, in the end, had no environmental cause.

Telling the community at a public meeting that the cause was psychogenic was "one of the most stressful things I've done in my entire career," Jones said.

"It's not because people were being mean," Jones said. "They were well meaning. This is scary. It's scary for the kids. It's terrifying for the parents. Many times people don't want to hear the answer."

Recommended reading: Mass Psychogenic Illness Attributed to Toxic Exposure at a High School.

The EPA announced Thursday that barrels full of rock and soil from the site of a 1970 train derailment in Le Roy will be removed by the end of February.

Soil and rock material from the drilling of the groundwater monitoring wells was placed in drums and stored at the site in a fenced-in area. Based upon data previously collected from the drilling activities, this material is believed to be non-hazardous. The EPA has directed the railroad company to do sampling to evaluate the material in some of the drums so they can be removed and disposed of off-site. This work is expected to be completed and the drums removed by the end of February 2012.

Full report (PDF)

UPDATE 5:23 p.m.: Press release from the office of Rep. Kathy Hochul:

WASHINGTON, D.C. – After Congresswoman Kathy Hochul spoke with Environmental Protection Agency (EPA) Regional Administrator Judith Enck yesterday, Congresswoman Hochul, along with senators Charles E. Schumer and Kirsten Gillibrand, announced that the EPA will remove barrels from the federal Superfund site in Le Roy by the end of February.

“I’m proud to announce that the EPA will finally help clean up LeRoy and will remove these barrels by the end of this month,” said Congresswoman Hochul. “The health and well-being of my constituents is my top priority and I am glad I was able to help remove these containers. Now we must ensure our local water supply and the soil is clean of any environmental threat.”

“Removing the barrels is absolutely the right thing to do, and I want to thank Administrator Enck and the EPA for getting it done,” said Senator Schumer. “Going forward, it’s going to be absolutely critical that we watch this site like a hawk and keep testing the area to monitor the plume and finish the remediation of this site. The EPA should also release the full December report so that everyone who lives, works, or attends school in the area has the information they need to understand what is being done to clean-up this site.”

“I am pleased to hear that the EPA will remove the barrels from this Superfund site,” said Senator Gillibrand, a member of the Senate Environment & Public Works Committee. “The EPA must now continue testing and monitoring all areas around the site to assure residents there has been no further contamination. Everyone in Le Roy and Genesee County must know that their community is a safe place to live, visit, work, and raise a family.”

The removed drums will be tested to ensure they are sent to the proper disposal location. Quarterly testing is undertaken at the Superfund site and is next scheduled to take place this month, however Congresswoman Hochul, Senator Schumer, and Senator Gillibrand have sent a letter to the EPA calling on them to release December’s report to the public to ensure the contamination has not spread. A copy of the letter can be found here. 

On Monday, Congresswoman Hochul sent a letter to EPA Administrator Lisa Jackson calling on the EPA to reevaluate the Superfund site. A copy of the letter can be found here.

Parents are reporting in comments on The Batavian that the Le Roy Central School District will hold a meeting Saturday morning to introduce report on test results performed at the Jr./Sr. school  Leader Professional Services and discuss a possible round of environmental testing at the Jr./Sr. high school.

On its website, Leader describes its services: "... a full-service environmental, industrial hygiene, safety and transportation compliance services company with principal offices in the following areas: Buffalo, New York; Rochester, New York; and Pittsburgh, Pennsylvania."

The meeting will be from 9 to 10 a.m. in the school auditorium.

Parents received an automated phone message about the meeting.

Meanwhile, Scientific America this morning published an interview with a professor of psychiatry at Harvard Medical School, Michael Jenike, who said PANS (sometimes called PANDAS) could be the cause of tic symptoms in 15 Le Roy HS students.

Jenike said the disorder was once thought rare, but he believes it is more common than many doctors realize.

I used to think it was very rare, too. I've worked on OCD (Obsessive-Compulsive Disorder) my whole career, and I couldn't figure out why no one could pin down what was going on with these kids who had had strep. Then the parents got me involved, and I learned a lot more. I now think PANS is extremely common — way, way more common than we thought. I get emails from parents every day whose kids have it. I don't think it is rare, is the bottom line.

The problem is, some doctors don't know about it, and some don't even think it exists, so it isn't diagnosed.

He also said he believes the age range could run higher than previously thought.

According to the article, Dr. Laszlo Mechtler, who reportedly treated 11 of the 12 girls initially reported with the illness, has said PANDAS was ruled out because it is rare and because it only afflicts young children.

UPDATE: Media release from Bill Albert, of the law firm Harris Beach.

Le Roy Central School District Community Meeting
 
Date: Saturday, February 4, 2012
 
Time: 9:00 – 10:00 a.m.
 
Place: High School Auditorium, 9300 South Street Road, Le Roy, N.Y.

Topic: As most are aware, the District has hired Leader Professional Services a highly regarded environmental, industrial hygiene, and safety consulting firm. Leader was hired to assess the testing already performed at the high school and to make recommendations for further testing at the school. Leader has completed its review and will present its recommendations for a work plan for additional testing to the parents of students in the District on Saturday, February 4 from 9:00-10:00 a.m. at the high school auditorium.

Presenters from Leadership Professional Services:
Michael P. Rumrill, President/CEO
Mary Ellen Holvey, CIH, Senior Industrial Hygienist
Peter von Schondorf, P.G., Senior Project Manager

Media Information Session 8:30 – 8:55 a.m.: Please join Leader Professional Services representatives and Superintendent Kim Cox at 8:30 a.m. for a media information session to preview the recommendations prior to the community meeting. This session will be held in the school’s library.

Parking: There will be no parking at the school’s parking lot. The school is hosting student Round Robin basketball games in which buses will be dropping off and picking up students throughout the day. You will be directed to park at Hartwood Park located next to the school.

It is clear to me that there is a lot of pain in our community and that people are looking to the leadership to better understand what is going on and what to do. Here’s my perspective.

I would like to start by saying that my heart truly goes out to the children and families directly affected by the Tourette's-like symptoms. I cannot even imagine how hard and possibly devastating this is for you! As a parent I do know what it is like to have your dreams for your child shattered (even if only temporarily) by forces with more power than you.

What I understand is that everyone would like answers. I am with you on this. We have some answers, but many of our questions are currently unanswered. It is very clear that there are a few students in our district of high-school age that are experiencing very real symptoms that resemble Tourette's. They and their parents are looking for answers as to why this is happening to them. I am not a doctor, neither is the school district. I do assume, though, that the reasons may not be the same for everyone and that everyone directly affected is desirous of a clear conclusion. While we search for answers we should keep in mind that the human brain is an extremely complex organ that we still do not fully understand.

Initially it seemed like this was an issue strictly affecting the school district and the high school specifically. My reaction as a community leader was that everything was being taken care of and under control, no need to worry. As the numbers of students affected began to increase it started to look like maybe there was a need for concern, but the school district was on top of it, so no need to panic. In the last few days, though, the situation seems to have escalated and spiraled rapidly out of control causing many rumors that have resulted in panic.

I am here to say that I do not have the answers. I know only what you already know. I've read Superintendent Cox's publications, read The Batavian and the Daily online, watched some of the Today Show and Dr. Drew, and listened to the opinions of others. What is clear to me is that there is more than one issue going on here and that the first brought the others to light. Thanks to the unrelenting efforts of some very strong parents who desperately want answers, we now know that the site of the train derailment 40-plus years ago was not properly cleaned up. It seems this is now being addressed. We also learned that there is another Superfund cleanup site in the area. The experts believe that these sites do not have anything to do with the Tourette's-like symptoms that are being exhibited by some of our youth. It is a good thing, though, that this was questioned otherwise we might not be seeing action at the derailment site. Clearly the contamination is not even near the school. I was speaking with someone today who served on the conservation committee at the time that the school was built, it seems very unlikely that any contaminated soil from the derailment site was used at the school site. I say it seems very unlikely because the site was already known to be contaminated before the school was built, but I take nothing for granted and support testing to put that question to bed for everyone.

Howard Owens, owner of The Batavian, did some research on some of the rumors that have been floating around. You can read what he found here: http://thebatavian.com/howard-owens/le-roy-high-school-property-rumors-and-research/30236. I also recommend looking at: http://thebatavian.com/howard-owens/follow-information-epa-and-dec-situations-le-roy/30242. Finally, this statement was released yesterday in regard to water tests: http://thebatavian.com/howard-owens/nih-offers-no-cost-consultations-bethesda-le-roy-teens-effected-illness/30252. It also includes an offer from NIH and NIHM, that was reiterated on Dr. Drew last night, for free consultation through these agencies. I hope that the families will take this offer as it seems that with these two agencies working together on their behalf answers will be found. Also I would like to call your attention to the Le Roy Pennysaver this weekend as I happen to know that there will be a well researched piece in regards to the derailment in there. To satisfy my own curiosity I have also asked my own DEC contact if the school is built on a swamp or just swampy and will let you know when I have an answer.

I am not an expert on the environment. Those of you who know me know I am a relentless recycler that even throws toilet paper and paper towel cores in the recycle bin with used tissues rather than into the landfill; I try to guilt people into saving Terra Cycle items for the school because it earns PTSO money, when truly I just am grateful to keep it out of the landfill; that I carry paper coffee cups around with me for hours and hours until I find a recycle bin; I freak out a little on my family if they buy water in plastic bottles (ok, a lot); and I also know a great deal about VOCs in regards to paint and stain and would like to see more no-VOC products used in our public facilities. Even so, the Superfund sites and the environmental questions at the school are beyond my area of expertise.

What I can say for certain is that I do not believe in any way that there is a conspiracy to cover something up. You know that if I am proven to be wrong about this I will be the first to step up and admit it. I understand why people might believe there is a cover up, though. I support productive questioning of everything. Does the (swimming) pool ring a bell? All of us live here together in the same small community, shop at the same stores, go to the same gyms and restaurants, and most of us even drink the same water, including Mrs. Cox. I do not believe that anyone is trying to maliciously cover up. I do believe, though, that none of us are experts on how to deal with the situation, particularly the resultant media spotlight.

Above all else, I believe that together as a community we can find answers, overcome this, and heal. We are strong as a team. Perhaps one of the most important ways we can do this is to try to stop the rumors. Rumors tend to be inflammatory and divisive. They can be productive if we look at them as being a tool to finding answers, but if we look at them as truth then we stall our own efforts to move forward and find real answers. Please let us not point the finger of blame, but instead unite around the truth we have and the questions we want answered and around the families who have brought all of this to our attention. Human beings are incredibly strong and resilient in the face of adversity. Let’s show our strength to each other and the rest of the country and heal as a community. United we stand, divided we fall, has been proven true after all.

Below I will paste several links to recent Batavian coverage of this issue so that you have quick references to look at. Earlier today I posted on my FB page that I was considering blogging about this and asked for my friends’ input on what I should include. I believe I have covered much of it; more of it will be covered in the Pennysaver this weekend. I would like to know from the rest of you what you would like to see from your community leaders, particularly those of us who are elected. I want to know your ideas. If you don’t feel comfortable sharing them here please feel free to confidentially contact me via email me at trusteekeys@rochester.rr.com.

As always, I appreciate your reading this and your input. Thank you, Howard, for providing us with this forum to update people and to discuss issues on.

Today: http://thebatavian.com/howard-owens/hawley-issues-statement-le-roy-illnesses/30268 Yesterday: http://thebatavian.com/howard-owens/le-roy-illnesses-todays-efforts-gather-more-information/30253 http://thebatavian.com/howard-owens/le-roy-superintendent-releases-letter-community/30250 Monday: http://thebatavian.com/howard-owens/photos-drive-down-gulf-road-le-roy/30215 http://thebatavian.com/howard-owens/hochul-responds-question-about-situation-le-roy/30214 http://thebatavian.com/howard-owens/statement-released-le-roy-central-school-district/30213 Over the weekend: http://thebatavian.com/howard-owens/statement-released-le-roy-central-school-district/30213 http://thebatavian.com/howard-owens/specialist-questions-scientific-validity-le-roy-districts-environmental-reports/30187 (This is not an exhaustive list.)