Late last year, 12 girls in New York were hit with strange symptoms that included spasms, and tics. Some children were so bad, and for so long, that they had to be pulled out of school and tutored at home. One who couldn’t return to school had seizures.

Parents have been demanding answers since late 2011.

An investigation was launched into why these children — all girls who attend the same school, Le Roy, in New York — have come down with this mysterious illness.

Visits to psychologists, medical doctors, MRIs, and more, have been conducted over the past months. Nothing has been revealed.

The story took an unsettling turn this week when a government health official told parents not to worry, that they know what’s been making the children suffer these symptoms; but that the government will not permit the disclosure of details, not even to the parents.

The official, from the state health department, called it a “federal issue.”

(Note: Updates on the story at tag “Le Roy“)

At a recent meeting with almost 200 concerned parents and Le Roy School students, Gregory Young from the state health department said that all 12 girls had been diagnosed and are being treated.

But Young also told the audience that the diagnosis and cause of the mysterious illness could not be shared because of the HIPPA Privacy Rule.

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.

He was in disbelief when Young made the statement that the children had been diagnosed and are receiving treatment.

Dupont told WHAM News: “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!”

According to WHAM, there was a heated exchange during the question and answer portion of the meeting. One angry parent even stood up and 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!”.

A reporter from WHAM even spoke to a parent on a condition of anonymity, and asked if he was aware of any diagnosis. He said that he did not get a diagnosis from doctors.

What happened

Don Miller, parent of a Le Roy student, was told by a doctor that his daughter suffers from Conversion Disorder. She had developed developed tic-like symptoms back in September.

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.

But then the New York State Department of Health was soon faced with more cases. By November 29, there were six identical cases. Same symptoms, all girls. One hasn’t been able to return to school due to seizures, according to WHEC.

According to the Webster Post, the best the Dept of Health was able to do was to verify that “the symptoms students’ are exhibiting are real,” but “they still don’t know what caused them.”

The Health Department also insisted at that time that no other students or faculty are at risk, and no other cases have been reported.

That changed in December, when another 6 were struck with the same symptoms. Taken in this context, Conversion Disorder seems highly unlikely.

According to WHAM, Yong told the recent gathering of parents and students that it wasn’t stress.

However, Buffalo News is reporting that “mass hysteria” might be the reason being given for the condition:

… At least one local expert in the field of movement disorders stated Thursday that what most of these girls experienced is likely the result of mass hysteria.

“Over a long period of time, this has been recognized as an underlying cause for such outbreaks,” said Dr. David G. Lichter, a clinical professor of neurology at the University at Buffalo.

Let me repeat that this is the Buffalo News asking a professor to share his thoughts on what might be the cause.

Dupont told WGRZ that his daughter has missed almost every single day of school for the past month. “Now she has to be tutored,” said Dupont. “I worry about her future. She’s only 17. She can’t even drive now.”

Dupont said his daughter is being treated by a neurologist, and he emphasized that his daughter still hasn’t gotten a diagnosis.

He also says that the most alarming thing for his family is that his daughter has never exhibited any symptoms like this before. “It’s heartbreaking because you know her normal mannerisms,” he said.

One of the girls, unnamed, described her situation to WHAM last November:

“This is my eighth or ninth day straight ticking and it just doesn’t stop,” says a 17-year-old senior at the LeRoy High School who has come down the mysterious illness.

13WHAM chose not to reveal the girl’s identity, but she says the Tourette-like symptoms started randomly a few weeks ago after she woke up from a nap. Things have gotten so bad for the 17-year-old that she can no longer go to school and has to be tutored after hours.

“It’s just a lot of pressure on my neck and makes my back sore,” the teenager says about the mysterious condition that causes her head and neck to shake uncontrollably.

The teen has seen a neurologist, psychologist and had a number of tests done but no one can come up with a diagnosis for why she suddenly developed this problem.

“It’s terribly scary because you don’t know what’s going on,” says the girl’s mom.

“They don’t know what’s causing it. … There is no diagnosis right now.”

At the meeting, parents were told a lot of what the cause wasn’t. Naturally, parents showed up at the meeting expecting to be told what the cause was.

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.”

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

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.”

More uneasy than ever before

Young attempted to reassure the audience, saying tics are “not uncommon.” He says that 4 to 24 percent of children ages 5 through 17 can develop tics.

However, when pressed, Young did admit that seeing the tics 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 said.

“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.

Someone from New York State Health Department cryptically told WHAM that they are continuing to treat the girls, “and are monitoring for any new cases.”

A recent video, about the meeting:

This is a news segment from November 2011:

This news video shows Young state that he cannot divulge any details, calling it a “federal issue.”