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Mechtler: Sensational media coverage exacerbating symptoms for patients

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:

Bill Elsasser
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The SDOH representative who spoke at the first Le Roy meeting alluded to a social component as consideration for this display of symptoms. Dr. Mechtler provides a more specific comment with regard to bullying as an influence.

That being said, if the bus fleet exhaust systems and passenger compartments have not been "sniffed" with Leader's $20,000 analyzer for the presence of carbon monoxide leakage, it must be difficult for authorities to rule out repeated, short-term exposure to CO as an "environmental" cause so early in the investigation.

Since it is impossible to prove a negative, the school has it's hands full. My hat goes off to Superintendent Kim Cox for acting as the lead in this inquiry. After all, we really do not know if the school is the cause. For example CO exposure can exist in the home, as well as, in personal vehicles.

John Woodworth JR
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FYI everyone, there is an great article in The Daily Newspaper from yesterday from another doctor who talks about the situation at LeRoy and some of these overzealous parents should read it with an open mind. Of course there is people like that blonde woman during yesterday's meeting that, you could put a cup of water in her face and she would call it toxic chemicals. Some of the comments like this one gentleman who wanted independent testing done. HELLO PEOPLE! Who the heck do you think was addressing you yesterday? My lord people! Like that article I read, if you do not believe the first doctor's opinion, go get a second opinion but, when you do not believe in the second or third, etc... That is just people who cannot comprehend what is being told to them or unwilling to accept it. Oh as far as the water in LeRoy it has always been horrible.

John Roach
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Mr. Woodworth,
For some, if they did not have a conspiracy to talk about, they would have no life. I have not seen anyone admit yet that they were wrong about the School Board trying to cover this up or "CYA", either

Tom Frew
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John Woodworth: If your comment is about Village Water which is also in much of the town including the school. Please remember that LeRoy had its own system up until about 5-6 years ago. That system had its issues with volume, algae, smell, and even sometimes hardness. The we hooked into Monroe County water. I personally believe that water is much better. No odor or taste and all kinds of volume. I'll add, on the old system, we had to change filters in our refrigerator (ice and chilled water dispensor). Today, maybe we change it every two years. Just a little perspective.

John Woodworth JR
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Amazing isn't it John? This woman was talking out of her arse, have the kids temporarily transferred to basements of Churches or the old Dollor Tree Store, etc... She would probably incite that the cleaning agents used to disinfect the building are causing her child to suffer from tics. There was also the gentleman MR. F. who said he would like an independent study done. Ding Ding Ding, that is what's happening or am I wrong? Then remember that 36 years old woman who was interviewed on YNN. She told YNN she suffered from tics but, was getting better but, when interview a week later by another News agency she was flopping like a fish out of water stating oh, this is a good day for me. I am sick of the parental and media drama.

BTW John, if you ever want to visit the base let me know and I will arrange a date to take you for a tour. It has changed a lot since, you were here.

John Woodworth JR
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Hey Tom, Sorry, no my comment was not about the village water. That comment is in reference to how some parents believe their is something in our water effecting their child. I have always hated drinking water in LeRoy because, I used to have well water and now I drink bottled water. Drinking city water (As I put it.) is like drinking my swimming pool. lol.

Ken Herrmann
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It is time for me to chime in. The conspiracy theorists appear to be out-of-control, but, I suppose, they are that way by their nature. I first began practicing psychotherapy in 1975 and teaching related courses at SUNY in 1978. Aside from this reflecting my old age, my experience might be useful in clarifying this, eventhough others have been doing a fine job, except for the mad conspiracy folks and publicity hounds. For these many years, I have found conversion disorders are a common problem, especially among adolescents. The Le Roy situation is a classic example. I agree with this article, especially with the information that the adults who are denying the probability that conversion disorder is the cause of the children's symptoms are exacerbating the symptoms. The harm being done to these children by denying psychological causation is upsetting. It is as though they are more concerned about proving a cover-up than helping the children involved. I would hope the conspiracy nuts are willing to pay for the duplicative testing costs, etc. They are not comical, they are harmful, especially to the children in Le Roy.

Tom Frew
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Ken, I recently had a disc problem and was under the care of a well recognized neurosurgeon at Strong. His NP lives in the community (she'll remain nameless!) and helped arrange for my care. Her statement to me on this was these parents need to take their kids home, give them a good, positive environment and help them get well. If you heard my words yesterday, they were very similar. I think it is human nature to be pretty wide open in sharing and dealing with every health issue that confronts us short of mental illness. For some reason, parents just don't want to buy that diagnosis. Get over it and deal with it as a big boy/girl parent!!

kevin kretschmer
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By what metric was this an exclusive interview? Dr. Mechtler spent almost an hour on the air talking with Tom Bauerle on WBEN Friday morning.

Frank Bartholomew
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I tend to beleive the parents have some element of denial, no one wants to hear the words ," your childs problem is a mental disorder". It is hard to grasp, and even harder to accept.
It is much more pleasing to the emotional state to say there is something out there that is the cause.
I'm no doctor, but if it were my child, I'm sure I would not be satisfied with the diagnosis, particularly if other factors were present.

Mark Potwora
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What is the school doing about this so called bulling...that are making it worst according to the Dr....Seem thats all we hear is how the schools across the nation are aggressively. attacking the problem... Quote form the Dr................................."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."....So is the school addressing this issue...If thats what they are blaming some of this on..Besides the media coverage....

Frank Bartholomew
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Mark, bullying/cyber bullying is new to the school districts, and from what I have seen and heard, most districts have, or in process of , anti bullying rules.
The media has every right to cover this story as it unfolds, but beyond all of the speculation, the answers will be reported, after all of the experts involved confer and reach the same conclusions. It will take time, and hopefully the toxic site clean up was a fringe benefit, and not a cause of the condition these girls suffer from.

bud prevost
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Mark, speaking as a parent of a Wolcott St School student, I know they go to great lengths to educate the kids on bullying. There is a big emphasis on character and community, and I am satisfied with the efforts of the district to address this.

Bill Elsasser
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Bill, from the state's report:

"A comprehensive search of the biomedical and life sciences literature using the National Library of Medicine database found a single case report of a 5-year-old Chinese boy who developed transient tics after using large amounts of a mercury-containing herbal mouth spray and a single case report of a 12-year-old Turkish boy who developed transient tics after carbon monoxide poisoning. Additional searches failed to identify other articles demonstrating associations between environmental chemical exposures, including trichloroethene (TCE), and the development of neurologic tics."

How likely is it, do you think, that CO is the cause of the tics? In all the history of recorded medical science, there is one documented case of carbon monoxide poisoning causing tics.

Howard, regarding your recent comments, (1)a mercury poison causative seems unlikely, unless you consider the new prevalence of eco-light bulbs as a common source here in America, as opposed to China...it is a reach. (2) The TCE exposure component does not seem a likely cause of verbal or kinetic tic symptoms.

(3) On the isssue of Carbon Monoxide, I did find the information on the Turkish boy's case before my post; however,I am not the entity who at the first meeting listed Carbon Monoxide as a potential cause of symptoms (are there other symptoms besides tics) and then ruled it out at the same meeting due to test results.

Are you saying the SDOH and/or GVEP did not consider CO as a potential known cause, but listed it? Does their report indicate whether or not they tested for CO either in the building or on the bus fleet? If not, they ruled out a probable cause without walking over to the bus garage and speaking with their maintenance crew...only based on past case history???

Howard, thanks for your insight and for your efforts to focus this investigation.

Bill Elsasser
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Howard, yes, I agree that neither TCE nor mercury poisoning is a good fit for tic symptoms. What about the "refs" rule-out on the common occurence of CO poisioning?

On Sunday morning, about 10:45 a.m., I walked out of Scooter's Restaurant in Le Roy, after a wonderful family breakfast. A young Japanese gentleman in a black, slick-quilted winter coat, walked over from in front of BK. He asked me where the kids, the kids from the school, you know, resided. When asked, he claimed to be from Channel 4? He wanted me to give him some names, addresses, etc., so he could interview the children. I told him I did not have a clue, neither did he. Rgds

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