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.