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January 12, 2012 - 1:10am

State health officials discuss outbreak of tics in Le Roy, but say they can't share the cause

posted by Howard B. Owens in schools, education, health, Le Roy, Le Roy Central School District.

In a community meeting Wednesday night to discuss an unusual outbreak of tics among female students at Le Roy High School, a state health official steadfastly refused to reveal the cause of the outbreak.

Citing not just HIPPA as a reason for keeping the diagnosis of 11 girls private, Dr. Gregory Young said that as a matter of principle he didn't want to see the girls "labeled" by what their doctor has found.

Young, from the NYS Department of Health, said the cause (or causes) isn't related to the environment; it isn't anything a person "catches"; it doesn't come from exposure to something, or from anything ingested. Nor does the cause stem from prescribed drugs or illicit drugs.

State health officials know what is behind the outbreak, but Young would not disclose it. Yet he tried to reassure parents that it's safe to send their children to school.

In all, according to Young -- though some in the audience disputed the number -- at least 11 girls have come down with the "tic manifestations" (Young cautioned against calling it a syndrome). 

The doctor's explanation, and a stone barrier he put up regarding the cause, didn't go over well with parents or students.

James Dupont Jr. spoke passionately about the need for officials to be more forthcoming about what physicians have found. Dupont complained that although Young said the cause has been diagnosed, nobody's told him what caused his daughter to develop tics.

After he spoke, he went into hallway and was mobbed by reporters.

"We all have to respect that (keeping medical information private), but I tell you what, if my daughter had a diagnosis and I knew that, as a parent, I would tell you -- because I’m not a doctor and I don’t care about HIPPA," Dupont said. "I care about getting these kids better or finding what’s causing it so it doesn’t get any worse."

Later, from the back of the auditorium, Dupont called out Young on his repeated insistance that a diagnosis has been completed for the 11 students. 

Dupont asked parents in attendance whose daughters had developed tics to raise their hands. More than a half dozen adults raised their hands. Then Dupont asked how many had been told by their daughters' doctors what caused the tics. Several said they had not been given a diagnosis.

One parent spoke up and said he was told the cause was "conversion disorder."

Young said he couldn't respond to that comment.

Conversion disorder is a neurosis usually brought on difficulties in a person's life, according to Wikipedia. It is marked by numbness, blindness, paralysis or fits. Britannica.com lists tics as a manifestation of conversion disorder.

After more questioning about conversion disorder, Thomas Wallace, from the state's mental health office, said it isn't really a diagnosis. He said it can be a symptom of other issues and that it can be found in clusters of patients.

The number of patients is not out of line with national statistics for tic manifestations among a group of 500 youngsters (in fact, in a group of 500, there should be at least 20 children with tics, based on national statistics).

What is unusual, he said, is that all of the patients are girls (boys develop tics at a 4-1 ratio over girls, according to national statics, Young said) and that they all developed the manifestations at about the same time.

Several students got up to ask questions or speak out, including a girl who said her name was Jessica.

"You think it's unethical for you not to give us the cause," Jessica said. "I think it's wrong for you not to tell us."

"If you were one of the individuals involved, you might feel differently," Young shot back.

"We're friends with these people," Jessica said. "Half of them haven't even been diagnosed yet. You're not telling us the truth because you don't really know what's going on."

Young repeated that he feels uncomfortable sharing private medical information. Later, he spoke about how he's always hated bureaucrats and he realized he was being one, but he said he simply couldn't share private medical information.

The one commonality Young said he could share was that all of the girls showed a greater manifestation during times of stress.

It's not unusual, he said, for people to manifest tics in time of stress, and there are a lot of stress factors in a young person's life. All people deal with stress differently, but it's well documented that stress can cause a number of physical reactions.

One big stresser for kids today is social media.

"There's a lot that goes on in social media today that parents don't know about, that schools don't know about," said Young, noting that the community meeting coincides with the start of the school session, and the students susceptible to tics will be under a new round of stress.

Just announcing the meeting created stress for the students involved, he said, and parents should be prepared for an increase of tic activity as reports about the meeting hit the media.

Dupont and other parents afterward said they don't believe it all boils down to stress especially since, for some of the students, the tics don't seem to become less frequent when school is out (though one mother who spoke said her daughter didn't have tics over Christmas vacation).

Among Dupont's suggestions is that a parent support group be formed. Then, perhaps, parents could share more information and find commonalities among their daughters (not all of the girls know each other or necessarily had contact with each other prior to the tic manifestations arising).

Young agreed this would be a good idea and also said that in a closed group of just the parents involved, he could speak more freely about what physicians have found.

UPDATE AND CLARIFICATION: The mention of types of drugs above wasn't meant to exclude from the meaning, as it does, that designer drugs weren't investigated as a cause. They were and subsequently ruled out as a cause. PANDAS has been ruled out as a cause. HPV vaccine has also been ruled out as a cause, according to Dr. Young. ODD or ADHD can make a child more susceptible to tics, but that isn't a cause. One thing Young intimated is that there is no one cause for all the girls.

Judith Kinsley ...
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Speaking as a parent and Jessica's mother, the lack of information and the misinformation given by the administration is disturbing. The meeting was held in response to a FOIA request done by one of the teachers at the school who cares about these kids. The request documented that the environmental investigations were never done as claimed by the administration.

Kyle Couchman
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Hmmm privacy is his concern yet the parents of students havent been told the diagnosis? The facts are way out of alignment with the statements supplied by the experts, Maybe parents could force the issue by pulling the children from school until they are given answers backed by cold hard facts. After all there is a reason that schools hate snow days they have minimum requirements for attendance to qualify for getting state funds, without them being met they dont get the monies for that day. Its pretty extreme but maybe a necessary step if officials continue to be vague and evasive, Including lies about environmental investigations that havent been done.

Judith Kinsley ...
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It has definitely been discussed in my home Kyle. My daughter's senior year and 2 weeks left until the class ranks are set in stone, which truthfully seems insignificant at this point unfortunately. Paying tuition at another high school is looking better and better.

cj sruger
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Looks like this story might be going National, Drudge now has a link to it.

Paul Cook
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Fark.com is non linking to the WGRZ story about this on its main page. We are very blessed in Genesee County to have such interesting stories.

Howard B. Owens
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BTW: As in Drudge linking to "the story" ... meaning any site carrying the story he may have linked to, no he linked specifically to this story. Welcome national readers.

Bea McManis
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Howard wrote:
"Welcome national readers."
Gee, Dad, does this mean we have to dress for dinner?

Lori Silvernail
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Bea, if they look around the site long enough maybe they'll pick up the story of you getting stuck in the elevator!

Chris Charvella
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This story is also spreading rather quickly through the tin-foil hat sector of teh interwebz.

Lex parsimoniae, crazy people. The government isn't experimenting on your kids.

Doug Yeomans
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Sounds like a classic case of mass hysteria to me. Just an opinion, not an educated diagnosis.

Bea McManis
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Lori wrote:
Bea, if they look around the site long enough maybe they'll pick up the story of you getting stuck in the elevator!

or....maybe I'll tell the story of sitting at City Court, today, with an 80+ year old man waiting to be assigned a court date for a bogus charge. It was quite an experience.

Cory Hawley
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"Dr. Gregory Young said that as a matter of principle he didn't want to see the girls "labelled" by what their doctor has found."

And this is better? His comment alone "labels" them or will cause them to be labeled.

FYI Labeled has only one "l"

kevin kretschmer
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The link on "Drudge" is gone. Keep your fingers crossed though. Maybe CNN's Dr. Sanjay Gupta will call tomorrow.

Andrew Lathan
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"No environmental investigations completed"? If this is true, why not?

It would be the first logical step, knowing that the school was built in a swamp and that a number of classrooms were underwater the first year as well as the gym you would think it would be the first thing the school would address- even if only to disprove it.

The EPA recently funded a study -"Guidance for Clinicians on the Recognition and Management of Health Effects Related to Mold Exposure and Moisture Indoors"

The study advises medical clinicians to be on the lookout for neurological affects from indoor mold.

Howard B. Owens
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Drudge changes over his links quite frequently.

Fox News NYC called, but I didn't have anything to tell them I hadn't already reported.

Gabor Deutsch
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I Googled "Chicks with Tics" but nothing came up for The Batavian.

Billie Owens
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Cory, according to Merriam-Webster's online dictionary, the word can be spelled labeled or labelled. But Associated Press style calls for the first spelling listed to be the preferred spelling for out purposes here. So although it's not incorrect, it is out of sync with AP style and I thank you for noticing and bringing it to our attention. I fixed it.

Doug Yeomans
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Okay, that hit my sophomoric funny bone and made me LOL

C. M. Barons
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One has to wonder, what was the New York State Health Department's motivation? ...To allay public fear concerning the tics? ...To absolve the school district of responsibility? ...To mitigate further incidences of the illness? ...To manipulate media attention resulting from rumors advanced due to lack of reliable information as to diagnosis/cause of the illness?

Given the lack of confidence that comes on the heels of the health officials' presentation on this matter- a presentation that has fueled more questions (and supposition) than answers, one can't avoid being highly critical of the official report.

...Reminds me of when the same health department visited Bergen to explain why the village water supply was being condemned. While failing to note that the action would render moot the primary obstacle to Monroe County's plan to build a landfill on the aquifer supplying the village's well; the health department fudged concern over an obscure "aesthetic standard" related to levels of Magnesium sulphate (Epsom salts) sufficient to be tasted. Aside from the known laxative effect of Magnesium sulphate, there is no statistical long term health risk from consuming sulphate containing water. On the contrary, sulphates are commonly found in drinking water, are naturally occurring and definitive of mineral water.

Getting back to the main subject; the motivation for making a lack-luster presentation might well be explained by knowing who summoned the health department to present its findings (or apparent lack of findings).

Although I can understand why the officials might focus on eliminating credibility of rumored explanations for the cause of the tic outbreak, why they might engage in downplaying the significance of the numbers of affected children and why they are compelled to conceal information that might interfere with specific patients' right to privacy; I cannot understand why they refused to mediate the vacuous gulf between yes, we know what caused this and no, we can't tell you without violating patient rights to privacy.

It would seem that these medical experts could have proposed a list of precautionary recommendations to avoid further incidence of tics and still preserved the privacy of those afflicted. Such a tactic would have served to allay fear and restore some confidence for parents and students who want to be unburdened of perilous rumor and the insecurity of not knowing what potential threat is at hand. Not knowing and acting from ignorance seems a greater threat to the afflicted children than surrendering a degree of privacy- especially when some of the parents of these children seem equally disgruntled by being left in the dark!

One can imagine that any child known to be affected by these tics will become a pariah among peers whose fear of contracting the illness is heightened by ignorance and the rumor mill. In light of the health department's unsatisfactory response, copy-cat drugs, STDs, prescription drugs, vaccinations, swamp gas, mold infestation and demonic possession are filling the void. Next we'll be witnessing exorcisms in Trigon Park!

Judith Kinsley ...
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Well put C.M. Thank you for so clearly stating the facts. The only conclusion I can reach after all the skirting of the facts and truths by these "officials" is there must be an issue of liability. The school had no intention of even recognizing the events until one of the parents of the affected girls called a news outlet. And to now blame it on stress or mass hysteria (my personal favorite) is ridiculous. What high school student doesn't have stress? Why would this school be different? I won't give credence to the other ignorant suggestion. Seems to me like blaming the victims. And just the fact that so much of this discussion has been about what could have caused it exemplifies the fact that to not say causes more problems than solutions. I tend to agree with Jessica that they don't know and won't say they don't know out of fear of actually having to do the research and spend the time and money to find out. Then again maybe they do and don't want to take responsibility.

Bea McManis
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