Mysterious Illness Hits NY Kids: Covered Up By HIPPA Privacy Rule 2012


Health leaders says that they know the cause of the mysterious illness, but they’re not telling the kids parents what that cause is.



A parent of a Le Roy student who developed tic-like symptoms said his daughter was told she suffers from Conversion Disorder.

Don Miller said his daughter’s doctor diagnosed her with the disorder.

Conversion Disorder is defined as a neurological disorder that can be brought on by stress with symptoms that include numbness, paralysis, and inability to speak.

The New York State Department of Health says since September, 12 girls in Le Roy suddenly developed tics. Some are so bad, they had to be pulled out of school and tutored at home.

Wednesday night, James Dupont attended a meeting at Le Roy Junior-Senior High School hoping to find some answers about what may be wrong with his daughter.

In the first week of December, his 17-year-old daughter suddenly developed tics, showing Tourette-like symptoms. But she isn’t the only one.

“I worry about my daughter’s future,” says Dupont. “She’s only 17. She can’t even drive now… My daughter hasn’t been able to go to school for a month because she’s got this so bad.”

Dupont hoped that the meeting with the New York State Department of Health would give him some answers, but he says he’s more frustrated and confused than before.

“It’s a tearjerker and it hits you in the gut at the same time. You feel frustrated and helpless because you don’t know what you can do, and you’re not getting any answers.”

During the meeting, Gregory Young from the state health department said that all 12 girls had been diagnosed and are being treated. Dupont says that he knows of no such diagnosis.

“Want to know something? If my daughter had a diagnosis and I knew about it, and I would, as her parent, I would tell you that!”

Young told the audience of almost 200 parents and students that the diagnosis and cause of the mysterious illness could not be shared because of the HIPPA Privacy Rule.

“Anytime we deal with a small number of cases and a dozen is a small number in a small community, it’s very easy for people to hear the diagnosis and tell people who that diagnosis belong to,” says Young.

Dupont believes that the health department doesn’t truly know what’s going on.

“The girls all go to the same neurologist and there is no diagnosis,” Dupont says. “They don’t know what’s causing it. That’s why we’re all here at this meeting. It’s not getting any better, and they can’t share a diagnosis because there is no diagnosis right now.”

During the meeting, Young clarified that the cause has nothing to do with illegal drugs, legal drugs, environmental issues at the school or in the Le Roy community, or vaccines. He did say that stress could exacerbate the tics.

“Stressors can make these symptoms worse,” Young says. “I’m not saying they’re causing it, but I’m saying that it makes it worse.”

Young also told the audience that tics are “not uncommon”. He says that 4 to 24 percent of children ages 5 through 17 can develop tics, especially children who have Obsessive Compulsive Disorder or Attention Deficit Disorder. However, he did admit seeing it in so many girls and only in girls at the school was strange.

“Tics have a four to one male distribution, so it’s much more common in males,” he says.

He also stated that an environmental study was done at the high school and they found nothing abnormal.

Hearing about what the causes weren’t was very frustrating for parents who wanted answers.

There was a heated exchange during the question and answer portion of the meeting, where an angry parent asked parents of girls with the tics to tell the rest of the parents whether there was a diagnosis or not. All the voices, about a half a dozen, yelled out “No!”.

13WHAM spoke to a parent of a girl with the tic symptoms who did not wish to be named. He, too, told us that he did not get a diagnosis from doctors.

“There has to be more to it,” says Dupont. “There has to be a cause, a common denominator. I always thought that we could get together with the families of the girls who have this and go through their daily routines and maybe find something that they’ve all done… Right now, they’re giving her shots in the neck or muscle relaxers and that does help, but they’re treating the symptoms not the cause.”

Several concerned parents said that they left Wednesday night’s meeting more nervous than they were before. They felt they weren’t given enough answers.

Others said that they understood why too much information couldn’t be divulged and wondered if the parents of the affected students knew the diagnosis but didn’t want to accept it.

For now, the New York State Health Department says they are continuing to treat the girls and are monitoring for any new cases.



One Response

  1. RioSam says:

    This sounds like they have been subjected to some kind of extreme toxic substance. But all going to the same nuerologist? That sounds like they are trying to keep the info contained…they should instead be bringing several different doctors and maybe they might get a idea of what they were exposed to…my guess is some type of radiation exposure..and they should be doing celation type therapy…it certainly wouldn’t hurt and it might help..

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