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EPA: Small amount of TCE found in one of drum of 80 tested so far at derailment site

By Howard B. Owens

Press release:

The EPA has reviewed the sample results for the contents of 80 out of about 240 drums of soil and rock material from the Lehigh Valley Railroad Derailment Superfund site.

The December 1970 derailment resulted in the release of liquid trichloroethene (TCE) and cyanide crystals. The material in the 80 drums was tested for these and other contaminants. This information is being used to determine whether the material is hazardous and what type of permitted facility the drums can be taken to for disposal.

In all cases, the results indicate that the materials in the drums are non-hazardous. TCE was detected in one drum, at a concentration of 0.2 parts per million (ppm), which is below health-based levels. There were no detectable levels of cyanide in any of the drums.

Analyses of the contents from the rest of the drums is ongoing and we will make results available. The drums will be taken to a permitted facility.

Q & A with Dr. Susan Swedo regarding PANDAS

By Howard B. Owens

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.

Dent releases statement regarding ongoing coverage of conversion disorder cases

By Howard B. Owens

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.

Open Letter: Kim Cox provides information on Leader's testing; responds to Bowcock's letter

By Howard B. Owens

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.

School board report: Consolidation plan update released

By Howard B. Owens

Report released by the city school district:

Highlights from the Batavia City School District Board of Education meeting on Feb. 6 include the following:

School Consolidation Update

On behalf of the BOE’s Buildings and Grounds Committee, Board Member Steve Mountain presented their completed feasibility study and a recommendation for consolidation of schools. The report also will be shared with the Budget Ambassadors as they review the district’s preliminary budget  and make recommendations to the board. The committee’s recommendation takes both fiscal and educational progress into account and includes:

-- Selling the Administration Building and relocating staff to available spaces around the District;
-- Utilizing the Jackson Elementary building for students in pre-kindergarten, kindergarten, and grade one;
-- Utilizing John Kennedy for students in grades two through four;
-- Placing grade five students at the middle school;
-- Revising the transportation policy so that all K-8 students who live farther than one mile from their school would be eligible for free busing; and,
-- Maintaining the Robert Morris building, making its classrooms and offices available for rental or lease.

Among the considerations behind their recommendation were the advantages of a “cluster model” for schools in which all students in a specific grade level are in the same building, providing for a more focused and deeper instructional plan. Research indicates that students benefit when curriculum is more consistent, and having all students of each grade in one building will facilitate this consistency as well as regular collaboration and sharing of strategies and resources. It also enables greater balance of class size as well as balancing concentrations of students with disabilities and economically disadvantaged students among classrooms.

While this cluster model would also describe the middle school, part of the recommendation is to have fifth-grade classrooms in a different part of that building, set off from the older students. Another suggestion is to create a house model --  a school within a school that has its own educational program, staff and students -- for both fifth- and sixth-graders. The study also noted several nearby districts which currently and successfully have fifth grade as part of their middle schools.

Jackson and John Kennedy elementary were designated as the sites for lower grades after all three of the current elementary buildings were analyzed in regard to number and size of classrooms, parking and parent drop-off/pick-up, bus loops, gymnasiums, cafeterias, library media centers, and size of the school grounds.

In regard to the finances, overall, the committee estimated an anticipated net savings in the first year of slightly more than $1 million. A reduction in staffing would have the greatest impact, followed by lower utility costs for the Robert Morris building. Relocating the Information Technology Department from the Administration Building, which involves moving the fiber optic cables that make up the district’s computer network, would be a one-time expense increase. This is recommended only upon the event of the sale or lease of the Administration Building, in which case the proceeds from the sale or lease could be used to mitigate the impact of the expense. Transportation costs would increase if more students become eligible and if those eligible students use district transportation, but, using current formulas for NYS transportation aid, approximately 90 percent of the costs would be returned the following year. 

BMS Comprehensive Educational Plan

More after the jump (click on the headline to read more)

Batavia Middle School (BMS) Principal Sandra Griffin presented highlights of the middle school’s Comprehensive Educational Plan (CEP), as mandated by NYS Education Department for all schools designated as being a School in Need of Improvement (SINI). BMS was classified as a SINI for not making adequate yearly progress (AYP) in meeting the higher proficiency targets in English Language Arts (ELA). While BMS has already begun implementation of practices to improve 
ELA proficiency, the CEP requires official board approval before being sent into the NYS Education Department.

The CEP includes three parts. Part I is a comprehensive school profile consisting of data on various topics -- such as enrollment, attendance, demographics, assessment data and survey results -- related to students, teachers, the district, the community, and the subject area of concern. Part II consists of the CEP team’s analysis of the data whereby patterns and root causes of low performance are identified and plans for improvement emerge. In Part III, the section for a detailed action plan, Mrs. Griffin highlighted two major strategies. First, the ELA staff will improve literacy instructional practices and make progress toward the college- and career-ready standard by more tightly aligning curriculum with the implementation of the Common Core State Standards in reading, writing, speaking and listening. Secondly, the BMS community will learn, practice, and model research-based literacy strategies by having all departments taking responsibility for improving student literacy skills and increasing opportunities for students to interact with informational text.

Mrs. Griffin stressed that utilizing data analysis, interim assessments, and an interdisciplinary approach while increasing the scope, span and rigor  of expectations will help more students reach the raised bar of achievement.

Superintendent’s Summary

In addition to other reports on various current district projects, Superintendent of Schools Margaret Puzio, briefly noted the following:

-- While the board had recommended a zero increase in the district budget for 2012-2013, so far, the preliminary numbers are at approximately a 3-4 percent increase, which reflects an approximate 5 percent increase in the tax levy. Budget Ambassadors will begin reviewing the preliminary budget this week, and their recommendations as well as those from administrative reviews will be forthcoming.

-- A committee of district employees representative of the variety of staff positions has come together to investigate ways to reduce health care costs in order to preserve more jobs and programs. Rising health care costs continue to be a great concern in budget projections.

-- The district is well on its way to implementing the new Common Core State Standards (CCSS) adopted by NYS in 2009. A recent training was held in Syracuse, and every department chair will be part of an upcoming district-wide presentation to staff on what and how CCSS are implemented.

School Board Association Awards

Superintendent Puzio formally thanked board members Patrick Burk and Amy Barone and congratulated each for receiving a Board Achievement Award from the NYS School Boards Association (NYSSBA). The NYSSBA’s School Board U recognition program is meant to acknowledge the extensive time and effort invested by members as they continually strive to expand their knowledge and skills for better board governance.

Update on Evaluation Procedure for Teachers and Principals

Deputy Superintendent Christopher Dailey provided an update on the emerging evaluation procedure for teachers and principals, noting that the State Education Department has requested permission to utilize pieces of our district plan as an example for other districts throughout the state.

The plan is in response to new legislation, first reported to the board by Puzio last fall (Nov. 1, 2011). At that time she noted:

-- Chapter 103 of the Laws of 2010 added a new section (3012-c) to the Education Law regarding annual professional performance reviews of all classroom teachers and building principals.
-- The new law applies first to all evaluations conducted by school districts on or after July 1, 2011, of teachers of “common branch subjects” (any or all of the subjects usually included in the daily program of an elementary school classroom) or English language arts or mathematics in grades four to eight, and principals employing such teachers.
-- By July 1, 2012, the process will be phased in for all classroom teachers and principals conducted by school districts or BOCES.
-- The new section of the law builds on current performance reviews, as opposed to replacing them.
-- The evaluations are intended to be a significant factor for employment decisions including but not limited to promotion, retention, tenure determination, and termination.
-- Performance reviews will yield a single composite effectiveness score (1-100) that incorporates multiple measures of effectiveness.
-- The measures used for scoring include student growth data on state assessments (initially 20 percent of the score, then 25 percent); locally selected measures of student achievement (initially 20 percent of the score, then drop down to 15 percent); and locally developed and negotiated criteria (for 60 percent of the score).
-- If a teacher or principal is rated as either developing or ineffective, the district must formulate and implement an improvement plan including such elements as the needed areas of improvement, timeline for achieving improvement, the manner in which improvement will be assessed, and differentiated activities to support improvement in those areas.
-- Districts must have an appeals procedure, established through negotiations, for teachers and principals to challenge their reviews.
-- This education law also establishes separate rules and for a Teacher Tenure Hearing related to charges of teacher or principal incompetence based solely upon an alleged pattern of ineffective teaching or performance (i.e., two consecutive annual “ineffective” ratings). In order to expedite the process of being able to remove an ineffective teacher or principal, the charges are to be heard by a single hearing officer within seven days after the pre-hearing conference and completed within 60 days thereafter. (A limited and time specific adjournment beyond the 60 days is available only if the hearing officer determines the delay is attributable to a circumstance or occurrence beyond the control of the requesting party and that an injustice would result if the adjournment was not granted.)

In a later update to the Board of Education (November 1, 2011), Mr. Dailey and Robert Morris Principal Diane Bonarigo outlined progress in working with the Batavia Teachers Association to determine measuring points and effective methods of evaluation for the locally determined 60 percent portion of the scoring measures. Utilizing ideas from the work two educational experts, Kim Marshall and Charlotte Danielson, Mr. Dailey and Mrs. Bonarigo presented a model that consists of approximately five annual, unannounced, mini-observations lasting 5-10 minutes, looking for evidence of “highly effective” to “ineffective” practices in three of the Four Domains taken from Danielson’s work: Planning and Preparation; Classroom Environment; Instruction; Professional Responsibilities. Then, within 48 hours, the principal would either provide written feedback, and/or have a conversation with the teacher to discuss that particular “snapshot” of teaching as well as invite the teacher to reflect.

The most recent report to the board included an update on the appeals process being negotiated, and on the 20-percent portion of the scoring measure. This portion of the measure is focused on defining the Student Learning Objective (SLO), which is particularly important for those subject areas in which there is no state assessment that can be used for teacher evaluation. Mr. Dailey outlined the five decisions that need to be effectively addressed before June 2012:

-- Assess and identify priorities and academic needs;
-- Identify which grades/subjects will have state-provided growth measures and which will require SLOs  as “comparable growth measures";
-- Determine district rules for how specific SLOs will get set;
-- Establish expectations for scoring SLOs and for determining teacher ratings for the growth component;
-- Determine district-wide processes for setting, reviewing and assessing SLOs in schools.

Booster Fundraising Proposals

Superintendent Puzio noted that, with the anticipated reductions in the number and in the scope of individual school programs, several parents have requested approval for forming booster groups to provide financial support for activities. Noting that difficult budget years are likely to continue, so too are these requests. As such, Mrs. Puzio suggested that the board consider formalizing a policy to handle such requests, and she asked for members’ initial thoughts and concerns. Some of the thoughts expressed by individual board members during this preliminary and exploratory discussion included:

-- The board should do whatever it can to preserve programs, including creating booster policies that would enable the preservation or support of activities;
-- A note that programs cannot become “pay to play” and that participation cannot become hinged on the ability to raise funds;
-- Any plan would need to consider the timeline for planning and scheduling (For example, any athletic group would need to be able to secure funding before the district could commit to scheduling competitions for the team.);
-- Breaking down all related expenses and forecasting the cost of activities could be burdensome;
-- Recently, some board members had expressed a concern about fundraising becoming too much of a burden for parents, yet this policy would likely increase the amount of fundraising that occurs.

Mrs. Puzio will consolidate the ideas and concerns in preparing a proposal for discussion next month at the March 26 school board meeting.

City council approves $1,500 annual raise

By Howard B. Owens

On a vote of 6-3 Monday night, the Batavia City Council approved a $1,500 annual raise for themselves.

Council pay will bump from $2,000 annually to $3,500.

It's the first pay raise for the council in 20 years.

New council members Brooks Hawley, Chris Doeringer and John Canale voted against the raise.

Statement from NIMH: Dr. Swedo has not seen patients, cannot confirm conversion disorder diagnosis

By Howard B. Owens

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.

Another conversion disorder patient reported in Le Roy

By Howard B. Owens

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."

Car accident reported at Ellicott and Jackson, with injuries

By Howard B. Owens

An accident with injuries is reported at Ellicott and Jackson streets.

One person may have neck and back injuries.

City Fire Department and Mercy EMS responding.

UPDATE 8:48 a.m.: The scene is clear. No further information at this time. The vehicle had plates from outside the state.

Mechtler disputes PANDAS diagnosis for Le Roy girls seen by New Jersey doctor

By Howard B. Owens

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.

RSVP of Genesee County marks one million hours of volunteerism

By Billie Owens

RSVP of Genesee County has reached a milestone -- one-million hours of free community service. Coordinator Dorian Ely made the announcement today.

The program’s volunteers, all aged 55 and older, have given a total of 1,007,797 hours of service. This translates into a contribution valued at $16.6 million according to the volunteer value rates set by the Independent Sector.

“We are fortunate in Genesee County to have so many individuals who want to give back to their community," Ely said. "This number is actually conservative; we know that many of the volunteers give more time than we are able to capture statistically.”

The RSVP volunteer placement program is part of the nation’s Senior Corps. It has been operating in Genesee County since 1985. The program places volunteers with more than 40 agencies countywide, matching their interests and talents with the needs of the organizations. The program currently has 425 active volunteers ranging in age from 55 to 96.

Ely noted that the program has changed through the years, moving from trying to be everything to everyone, to focusing on national social-impact areas such as aging in place, service to veterans, and disaster preparedness.

While there are many ways to serve, volunteers are currently needed to help senior citizens stay in their homes by providing medical transportation, friendly visiting, and delivery of library materials.

Coordination and administration of these programs are made possible by the Rochester Area Community Foundation’s Muriel H. Marshall Fund for the Aging, but they rely on volunteers to be an active part of delivering these services. Additionally, volunteers are being sought to become co-facilitators for Chronic Disease Self-Management Program (CDSMP) workshops.

For information on RSVP of Genesee County, Marshall Fund programs, or CDSMP, contact the Office for the Aging at 343-1611.

UMMC's laboratory awarded 'Gold Seal of Approval'

By Howard B. Owens

Press release:

United Memorial Medical Center Laboratory has earned The Joint Commission’s Gold Seal of Approval™ for accreditation by demonstrating compliance with The Joint Commission’s national standards for health care quality and safety in laboratories. The accreditation award recognizes United Memorial’s dedication to continuous compliance with The Joint Commission’s state-of-the-art standards.

The UMMC Laboratory underwent a rigorous unannounced on-site survey in the Fall of 2011. A team of Joint Commission expert surveyors evaluated the lab for compliance with standards of care that directly affect the quality and safety of diagnostic services and patient care.

"In achieving Joint Commission accreditation, United Memorial has demonstrated its commitment to the highest level of care for its patients," says Jennifer Rhamy, M.B.A., M.A., M.T. (ASCP) SBB, HP, executive director, Laboratory Accreditation Program, The Joint Commission.

"With Joint Commission accreditation, we are making a significant investment in quality on a day-to-day basis from the top down. Joint Commission accreditation provides us a framework to take our organization to the next level and helps create a culture of excellence,” said Mark C. Schoell, president and CEO of United Memorial.

“For our organization, achieving Joint Commission accreditation is a major step toward maintaining excellence and continually improving the care we provide.”

The Joint Commission has been evaluating and accrediting laboratory services since 1979. Today, The Joint Commission accredits almost 2,000 organizations providing laboratory services. This represents almost 3,000 Clinical Laboratory Improvement Amendment certificate laboratories, including independent reference labs and in vitro fertilization labs, and those connected with other health care organizations such as hospitals, ambulatory surgical centers and long-term care facilities.

The Joint Commission’s laboratory standards emphasize the results a laboratory should achieve instead of emphasizing the technical methods of performing testing, and were developed with input from professional laboratory organizations.

Joint Commission standards address processes that follow laboratory specimens -- from the doctor’s order into the laboratory, from specimen collection then back to the patient through result reporting -- focusing on the provision of high quality, safe laboratory services integrated with patient care.

These standards highlight the essential nature of laboratory services on the actual care and service delivery processes that contribute to and support the overall health care delivery system.

Hochul joins bipartisan House Dairy Caucus

By Howard B. Owens

Press release:

During a visit to Zuber Farms in Churchville today to discuss her opposition to burdensome government regulations for farmers --like the recently lifted ban on the wintertime application of manure -- Congresswoman Kathy Hochul announced she has joined the bipartisan House Dairy Caucus to better represent the farmers in New York’s 26th Congressional District.

“Dairy farms play an important role to the New York State economy, making up nearly half of our state’s $4.5 billion agriculture industry and yielding more than 12 billion pounds of milk annually,” said Congresswoman Hochul.

“Fighting against burdensome regulations, like the ban on the wintertime application of manure, and fighting to give them the workforce they need by supporting an expansion of a temporary guest worker program, are some of the reasons why I joined the House Dairy Caucus.

"We must continue to support commonsense initiatives that provide our farmers with the proper resources and right opportunities to grow and continue to be driving factors in the Western New York economy.”

With nearly 35,000 farms, most family owned, New York’s agriculture industry is one of the state’s largest small-business industries. New York currently ranks fourth in the nation in milk production and Wyoming County, in the middle of New York’s 26th District, leads the state with almost 200 dairy operations.

Congresswoman Hochul, along with Representatives Paul Tonko (NY-21) and Richard Hanna (NY-24), today sent a letter to Secretary of Agriculture Tom Vilsack commending him for removing the ban of the wintertime application of manure.

In October, representatives Hochul and Hanna introduced a bill that would allow dairy farmers to bring in temporary guest workers through the H-2A visa program to address their labor shortages. Currently, dairy farmers are unable to apply for H-2A visas due to the year-round production of dairy. 

Joining Congresswoman Hochul on the tour today at Zuber Farms were Kim and Eric Zuber, co-managers of Zuber Farms, Scott Page, president of the Genesee County Farm Bureau, and seven other local dairy farmers from throughout Western New York.

Kim is also the former president for the Monroe County Farm Bureau and a member of the Executive Committee for the New York Farm Bureau's Western New York Regional Advisory Committee. Eric is currently a member of the New York Farm Bureau.

Zuber Farms is a dairy in Monroe County, home to 1,000 head of young stock. The 10 farmers present today represented more than 10,000 head of cattle.

Country music's Ramblin' Lou Family Band and Canada's 'Polka King' to play at GCC

By Billie Owens

Press release:

The Genesee Center for the Arts is delighted to be welcoming the First Family of Western New York's country music scene, the Ramblin' Lou Family Band. Special guest will be Canadian "Polka King" -- Walter Ostanek.

They will perform at 3 p.m. on Sunday, Feb. 19 in the Stuart Steiner Theatre at Genesee Community College in Batavia. Those who love country-Western music should get their tickets soon since this one-show-only event will likely sell out!

Ramblin' Lou Family Band has delivered a lifetime of good country music, family fun and entertainment across Western New York and the nation to audiences of all ages. They have, in fact, become a mainstay at Erie County Fair playing for more the 45 consecutive years! They also draw loyal audiences to many other local events including Canal Fest, West Seneca Town Park, Cheektowaga Seniors, and countless festivals.

Self-taught Ramblin' Lou sings and plays guitar; his wife, Joanie, a trained and accomplished musician, sings and plays lead guitar, their son, Lou Jr., plays the drums, while daughter, Linda Lou, sings and plays the bass. Lynn Carol plays keyboards.

Together, their cheerful disposition and down-home friendliness can't be beat. Through their many years of performing, audiences have consistently remarked how joy and happiness radiate from this fun-lovin' family and their talented friends.

Ramblin' Lou (whose seldom-heard last name is Schriver), grew up in Tonawanda and fell in love with the beat and melody of country music when he was a boy. He and his granddad would travel around Pennsylvania on Saturday nights entertaining the locals at fire halls with square dances. At the age of 9, he got his first guitar. As a teenager he approached a local radio station about a live music show and his original 15-minute program eventually grew to three hours.

He now owns and operates WXRL-AM (1300) radio and tours national country music events. He is a member of the Country Music Hall of Fame in Nashville and the Broadcasters Hall of Fame. In addition, he and his wife are members of the "Walkway of Stars" in the Country Music Hall of Fame. Lou is also in Nashville's D.J. Broadcasters Hall of Fame.

Tickets are $10 for adults, $8 seniors (55+), $5 for GCC staff and high school students and $3 for GCC students. Don't wait long, tickets are going fast!

For ticket information or reservations, contact the Genesee Center for the Arts Box Office at 345-6814, or by email at boxoffice@genesee.edu. The Genesee Center for the Arts Box Office accepts cash, checks and credit cards. For door-to-door directions, sent via email, visit www.genesee.edu.

Executive director of local ARC chapter named Geneseean of the Year

By Billie Owens

The Geneseean of the Year for 2011 is Donna Saskowski, executive director of the local chapter of NY ARC. The Genesee County Chamber of Commerce made the announcement today.

Saskowski will be among the honorees at the chamber's 40th Annual Awards Ceremony on April 14 at the Clarion Hotel in Batavia. The other recipients were announced Friday.

She is renowned for her service to people with developmental disabilities, her leadership skills and commitment to community development. In addition, she is praised for her ability to forge partnerships and collaborations, strengthen existing services and integrate people with disabilities into the community, thereby maximizing their opportunities for full participation.

A lifelong resident of the Town of Darien, she received her bachelor's and master's degrees in Social Work from the University of Buffalo School of Social Work and has been on staff at Genesee ARC since 1989 and executive director since 2004.

Saskowski was named Social Worker of the Year in 2010 by the Western Division of the New York State Chapter of the National Association of Social Workers (NASW). In 2006, she was a member of the Community Health Foundation Leadership Fellows and she is a member of Leadership Genesee’s Class of 2005.

The other 2011 chamber award recipients (previously announced) are:

Business of the Year: Arctic Refrigeration Company of Batavia, Inc.  

Agricultural Business of the Year: Baskin Livestock, Inc.

Industry of the Year: Graham Corporation

Entrepreneurial Business of the Year: Adept Equipment Services

Innovative Enterprise of the Year: Palm Island Indoor Waterpark at the Clarion Hotel

If you'd like to attend the event, call Kelly J. Bermingham, at 343-7440, ext. 26, to make your reservations or with any questions you may have.

GCEDC releases follow up information on STAMP project

By Howard B. Owens

Press release:

Information addressing the comments of the Western New York Science Technology and Advanced Manufacturing Park (WNY STAMP) Final Generic Impact Statement (FGEIS) was discussed on January 26th at the Town of Alabama Fire Hall. Over 100 residents and interested constituents were on hand to receive an update on the progress of the WNY STAMP project.

A general overview of the project, the environmental review process, and responses to common topics from the Draft Generic Impact Statement (DGEIS) were presented by the GCEDC. Residents were given an opportunity to ask questions and provide additional feedback on the project.

On February 9, 2012 the GCEDC board, lead agency of the environmental review process, will consider a written findings statement for the WNY STAMP project. If the findings statement is approved, the environmental review process for the WNY STAMP project will be complete. At that point, the GCEDC will seek approval for the project from the Town of Alabama. The following steps will follow:

  • Negotiation and adoption by the GCEDC, and the Town of Alabama on an incentive zoning agreement that will provide relief from some of the Town’s zoning laws in exchange for amenities provided by the GCEDC to the Town.

  • Once the incentive zoning agreement is in place the Town of Alabama Planning Board and the Town of Alabama will begin consideration of the GCEDC’s application to rezone the STAMP site to a Technology Park and to amend the Town of Alabama Comprehensive Plan to address the STAMP project.

  • In conjunction with the Town’s rezoning process, the County Planning Board will hold a public meeting, review, and make recommendations to the Alabama Town Board on the rezoning application.

To further assist the Town with its decision-making process, a public opinion survey of the project will be distributed to the residents of the Town of Alabama. The survey will be conducted by a third party legal, and market research company that specializes in public opinion polling. The results of the survey will be presented to the Town for their consideration at the conclusion of the survey.

After the planning agencies return comments to the Town of Alabama, the board will hold a public hearing on the rezoning application. This public hearing will give the residents of Alabama another opportunity to comment, on the record, regarding the proposed rezoning of the WNY STAMP site.

Simultaneously, with the Town’s approval process the GCEDC, in conjunction with state and federal representatives, will continue to pursue funding sources that will be used in the event the STAMP project is approved by the Town of Alabama.

State Senator Michael Ranzenhofer and National Grid have, and continue to be of assistance to the GCEDC to obtain funding for this important project. Senator Ranzenhofer’s recognition of the regional impact of this project and his commitment to it are reflected in his recent state budget request for funding of the STAMP project.

This comprehensive environmental review process, as outlined in the State Environmental Conservation Law, is the same process that was conducted for the Genesee Valley Agri-Business Park in the Town of Batavia.

If, after careful review and consideration the Town of Alabama approves the GCEDC application to rezone the STAMP property, the GCEDC can begin to work with engineers to develop infrastructure plans for the site and strategically engage in a sales and marketing process to attract the first tenant to the STAMP site.

Hawley promoting tuition reimbursement for volunteer firefighters

By Howard B. Owens

Press release:

Assemblyman Steve Hawley (R,I,C-Batavia) is promoting a tuition reimbursement program for volunteer firefighters in Western New York. The deadline for the Firemen’s Association of the State of New York (FASNY) Higher Education Learning Plan (FASNY HELP) has been extended to Feb. 15, and the assemblyman believes it is a well-deserved benefit for Western New York’s courageous volunteers.

“I have always felt that the safety and security provided by our selfless, volunteer firefighters is a cornerstone of a strong community, and that it is our duty to thank and reward them for their sacrifice,” Hawley said. “FASNY HELP is a great way to show our appreciation for these brave men and women, and I hope that this program is a productive incentive in volunteer recruiting, because we truly can never have enough help at our local fire companies.”

FASNY HELP was developed as an incentive for people to serve in New York’s volunteer fire service. This program will provide tuition reimbursement to student volunteers allowing them to attain up to eighty (80) credit hours from their closest New York state chartered community college, or one located within 50 miles of their primary residence.

Under the FASNY HELP tuition reimbursement program, student volunteers will be eligible to have up to 100 percent of their tuition reimbursed in exchange for maintaining defined grades and fulfilling defined service requirements as a member in good standing in one of New York’s volunteer fire companies. There is no restriction on the type of academic course(s) the FASNY HELP student volunteer can pursue.

For more information, contact John D'Alessandro, FASNY deputy Volunteer Programs coordinator at 518-694-3136, or visit FASNY HELP on the web at http://www.fasny.com/index.php/membership/benefits/fasny-help.

Batavia couple sentenced in welfare fraud case

By Howard B. Owens

A Batavia couple who admitted to welfare fraud were ordered by Judge Robert Noonan on Thursday to repay the government $14,017.14 they stole by filing false reports.

They are also disqualified from receiving food stamps.

Joshua Carney, 34, will serve four months of intermittent jail time in the Genesee County Jail, and then be on probation for three years. His wife, Holly Carney, 29, will serve three years probation.

In November, both Joshua and Holly entered guilty pleas to offering a false instrument for filing, 2nd.

Joshua had been charged with nine counts of offering a false instrument for filing and one count of grand larceny, 3rd.

Holly had been charged with 11 counts of offering a false instrument for filing and one count of grand larceny, 3rd.

They were accused of submitting forms to DSS that failed to report Joshua's commission income from his employer.

The confidential tip line for suspected welfare fraud is 344-2580, ext. 6417.

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