Children in New York Contract Mysterious Illness, Federal Government Preventing Disclosure of DiseaseJanuary 14th, 2012
Update: Mystery Teen Illness Grows in Upstate NY, More Cases Reported
The mystery illness now producing Tourette’s-like symptoms in a more than a dozen girls from upstate New York is also affecting a 36-year-old who is experiencing the same tics as the teens.
Nurse practitioner Marge Fitzsimmons, who has spent her whole life in LeRoy, N.Y., lives just a few miles from the school the teens attend.
“It started out with sudden head jerks in the middle of October,” Fitzsimmons told NBC News, the tics occasionally interfering with her ability to talk.
It got so bad she had to leave her job working with developmentally disabled patients until the tics subside.
“The motor tics wouldn’t stop, and the vocal tics started, and I went to one of the bosses and said I have to go.”
She hasn’t been back to work in two months. On a good day, Fitzsimmons said, the tics are sporadic. On a bad day, she cannot control them. Extensive testing – including a CAT scan and blood work – didn’t provide any answers, the same frustration experienced by the teens.
“When it first started I thought maybe I’m going crazy,” she said. “As an adult, I can’t imagine these teenagers going through this and for anyone to think that they’re faking it at all. Try living a day in their shoes.”
Update: More Le Roy Students Struck with ‘Mystery Illness,’ Parents Demand More Tests
Via: Liberty Confidential:
A handful of Le Roy parents gathered Sunday for a face-to-face discussion on whether or not they accept the conversion disorder diagnosis. Other topics included offers to help that had been extended from other health professionals, and whether or not to demand further environmental testing of school grounds.
Another topic for discussion: at least another 2 children have begun exhibiting similar symptoms as the other 12; and it’s possible that as many as 16 children have contracted this ‘mystery illness.’ (For obvious reasons, some parents are seeking to keep their children as far away from the media spotlight as possible.)
It was also recently revealed that Erin Brockovich has become interested in this case.
“We’re told Beth Miller has been speaking with her about this and that Erin Brockovich is disturbed by the lack of testing that’s been done at the school,” reported WHEC’s Christine VanTimmeren.
Update: ‘Teen Girls’ Mystery Illness Now Has a Diagnosis: Mass Hysteria’
Tell me another one.
The day after TODAY reported on the baffling case of 12 teenage girls at one school who mysteriously fell ill with Tourette’s-like symptoms of tics and verbal outbursts, a doctor who is treating some of the girls has come forward to offer an explanation. Dr. Laszlo Mechtler, a neurologist in Amherst, N.Y., says the diagnosis is “conversion disorder,” or mass hysteria.
“It’s happened before, all around the world, in different parts of the world. It’s a rare phenomena. Physicians are intrigued by it,” Mechtler told TODAY on Wednesday. “The bottom line is these teenagers will get better.”
On the show Tuesday, psychologist and TODAY contributor Dr. Gail Saltz noted that just because the girls’ symptoms may be psychological in origin doesn’t make them any less real or painful.
“That’s not faking it. They’re real symptoms,” Saltz continued. “They need a psychiatric or psychological treatment. Treatment does work.’’
Conversion disorder symptoms usually occur after a stress event, although a patient can be more at risk if also suffering from an illness. Symptoms may last for days or weeks and can include blindness, inability to speak, numbness or other neurologic problems.
It’s unclear which of the girls first showed symptoms, or whether any particular event triggered the outbreak. High school cheerleader and art student Thera Sanchez says her tics, stammer and verbal outbursts appeared out of the blue after a nap one day last October.
“I was fine. I was perfectly fine. There was nothing going on, and then I just woke up, and that’s when the stuttering started,” Sanchez told TODAY.
“I’m very angry,’’ Sanchez told TODAY’s Ann Curry during an interview Tuesday. “I’m very frustrated. No one’s giving me answers.’’
The New York State Health Department has been investigating the case for more than three months and says the school building is not to blame. Officials from the LeRoy Junior-Senior High School in upstate New York, where all the girls attended when their symptoms began, have released environmental reports, conducted by an outside agency, showing no substances in any of the school buildings that could cause health problems.
Health officials ruled out carbon monoxide, illegal drugs and other factors as potential causes. Officials say no one at the school is in any danger.
“We have conclusively ruled out any form of infection or communicable disease and there’s no evidence of any environmental factor,’’ Dr. Gregory Young of the New York Department of Health told NBC News.
But some of the girls’ parents say they’re not satisfied with the explanations so far.
“Obviously we are all not just accepting that this is a stress thing,” Jim Dupont, father of one of the affected girls, told TODAY on Wednesday. “It’s heart wrenching, you fear your daughter’s not going to have a normal life.”
They’re saying that the cause isn’t Gardasil:
NYS Health Department spokesman Jeff Hammond also says vaccines such as Gardasil were investigated as a cause and ruled out. (WGRZ)
Did these girls receive Gardasil vaccinations?
The diagnosis, which is apparently known by the government, is being kept from the girls and their families.
Here’s a question for any of the several medical doctors who regularly read Cryptogon:
Have you ever heard of doctors treating patients without telling them (or their families) what they’re being treated for?
Here’s a response from Dr. H in the U.S. I have edited this slightly to maintain Dr. H’s privacy:
Kevin, I’m an MD in [a state in the U.S.]. I’ve been in private practice since completing my residency in 2002.
The idea that the govt would not permit a doctor to tell a patient (or a peds patient’s parents/guardians) a diagnosis is insane. No physician I know would agree to that.
The sacred doctor-patient bond is more important than any edicts out of Washington. They might be able to issue gag orders to the courts, but they can’t gag me or my colleagues.
The one circumstance where it might make sense not to tell a patient a diagnosis would be if there were more harm from revealing the diagnosis–maybe Munchausen’s by proxy if the child were not physically there, abuse by the parent was suspected, and telling the parent that “we know you’ve been hurting your child for attention” might result in more harm to the kid before the child could be taken away from an abusive situation. What you wrote about doesn’t fit with that scenario, of course.
Saying “I know but won’t tell you what I know” is malpractice. Any atty will have tons of cash rolling in through torts if a doctor really said that.
You can use this email, but please don’t disclose my name.
Via: Liberty Confidential:
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.”
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