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Entries in Tourette Syndrome (3)

Wednesday
Feb222012

Erin Brockovich: Research into Upstate NY Tourette's Case Preliminary

ABC News(NEW YORK) -- Environmental activist Erin Brockovich has corrected misinformation regarding her investigation into the medical mystery in an upstate New York town where a group of teenagers has displayed symptoms similar to Tourette syndrome, saying that her research is still preliminary.

Nearly two dozen people, including one 36-year-old, in the upstate New York village of LeRoy are now experiencing uncontrollable tics, seizures and outbursts that might have been caused by a chemical spill in the town more than 40 years ago.

In a statement released Tuesday, Brockovich said she is still investigating a plume from a 1970 train derailment in LeRoy, which dumped cyanide and trichloroethylene (TCE) -- a chlorinated hydrocarbon used to de-grease metal parts -- within three miles of the village's high school.

The Environmental Protection Agency says that TCE can affect the central nervous system, and cause dizziness, headache, sleepiness, nausea, confusion, blurred vision and facial numbness.  It is suspected of being linked to the symptoms among LeRoy's local teens.

Brockovich associate Bob Bowcock reportedly said on Feb. 11 that samples taken from the wells of private residences had not migrated west and south -- toward LeRoy High School -- as some had feared.  Although at the time Browcock said that the investigation would continue for the next several months, Brockovich on Tuesday said that the tests he referred to were preliminary.

"Contrary to an erroneous news report, I want to make clear that my investigation into possible sources of environmental contamination in LeRoy, New York that may or may not be linked to the serious illnesses suffered by various members of the community is not complete," Brockovich said in a statement.  "In fact, it appears the number of people in the area displaying alarming health issues that can be caused by TCE is growing."

"It took the EPA 40 years to investigate the contamination from the train derailment and it will take us more than 40 days to get to the root of the problem in LeRoy.  I want to further stress that we have not ruled out the TCE plume from the train derailment as a source of contamination at LeRoy High School," she added.

Brockovich, 51, added that her team has many more areas of LeRoy to test, including the local quarry, six fracking wells at the high school and the Methyl tert-butyl ether (MtBE) contamination in local wells, while stressing that thoroughness is key in her investigation.

Copyright 2012 ABC News Radio

Wednesday
Feb082012

NY Mystery Illness: Parents Want Erin Brockovich On the Case

ABC News(NEW YORK) -- Months of mounting frustration surrounding a mysterious illness apparently causing facial tics and verbal outbursts that started among teenagers in Le Roy, N.Y., has come to a head as reports of the illness expand and the high school where it began comes under fire.

Nearly two dozen people in the upstate New York community are now experiencing uncontrollable tics, seizures and outbursts they say may have been caused by a chemical spill in the town more than 40 years ago.

The original affected teenagers -- 14 girls and one boy -- all attended Le Roy Junior-Senior High School when they started showing symptoms last fall. Most of the teens have been diagnosed with conversion disorder, a psychological condition induced by stress that is sometimes called "mass hysteria" when occurring in clusters, such as in Le Roy. One of the victims is a 36-year-old.

The parents of the afflicted teenagers contest that diagnosis and dismiss suggestions that social media may be to blame.

"No, there is too much going on in Le Roy," Charlene Leubner said Tuesday on ABC's Good Morning America.

Leubner's 16-year-old daughter, Traci, is one of the teenagers who first began experiencing symptoms late last year.

"Mine started in early December and I started with a really bad stutter to where I couldn't talk and I got sent home," Traci Leubner said of her symptoms, which she says are provoked by stress and sadness.  "It eventually developed into a head twitch and then it went away for a little while."

Leubner and other parents are demanding that the school allow environmental activist Erin Brockovich to investigate potential environmental causes behind the disease.

Brockovich, who famously linked a cluster of cancer cases in California to contaminated drinking water, prompting an Oscar-winning movie starring Julia Roberts, launched her own investigation last month.  She says a derailed train that spilled cyanide and trichloroethene within about three miles of Le Roy High School in 1970 may be behind the Tourette-like symptoms.

"They have not ruled everything out yet," Brockovich told USA Today. "When I read reports like this that the New York Department of Health and state agencies were well aware of the spill and you don't do water testing or vapor extraction tests, you don't have an all-clear."

Bob Bowcock, an investigator for Brockovich's team, was asked by officials to leave the Le Roy High School property during a visit there Jan. 28 to collect soil, air and water samples from the school grounds.

On Monday, he posted an open letter to the school asking for their assistance, according to The Daily News.  The school has said it will post a response on the school district's website.

"We really want the school to do some outside testing and let Erin Brockovich's crew in because there has been great resistance as far as having them come in," Lana Clark, whose 16-year-old daughter, Lauren Scalzo, is another of the 15 students originally afflicted, said on GMA.

"They were too quick to reach a diagnosis and they did minimal testing," she said of the school's reaction to the outbreak.

Copyright 2012 ABC News Radio

Friday
Apr012011

Teen Overcomes Tourette's with Risky Procedure

ABC News(NEW YORK) -- As with many nine-year-old boys, Robbie Lettieri of Long Island, N.Y., just couldn't sit still. He incessantly opened and closed his mouth without speaking, moved his fingers and coughed even though he wasn't sick. Soon, random incomprehensible vocal outbursts accompanied his repetitive motions.

"I thought it was a phase," Robbie's father, Jay Lettieri, said.

But what started as minor tics only grew worse as Robbie aged. By nine, he was diagnosed with Tourette's syndrome, a neurobiological disorder that brings on sudden uncontrollable motor tics. Robbie's tic episodes have grown so traumatic that he has broken bones during his convulsions.

Nearly 200,000 Americans are diagnosed with Tourette's syndrome, according to the Tourette Syndrome Association. While there's no cure for the disorder, doctors typically prescribe medication to treat the symptoms.

Robbie was prescribed 42 different kinds of medications in six years, including antidepressants and anti-hyperactive drugs, which were intended to help him control his symptoms. But Jay Lettieri said the medication did not seem to work for Robbie's worsening symptoms. Indeed, the side effects of the medications were so extreme that Robbie attempted suicide three times while taking the medications.

Robbie's neurologist recommended deep-brain stimulation, an experimental procedure that requires surgically implanting a device deep in the brain. With the switch of a button, the device emits electric impulses to specific parts of the brain that help to control the misfirings that could be causing the tremors.

Deep-brain stimulation is used as a treatment to manage epilepsy. The procedure has also been used to manage some cases of depression and Tourette's, but the U.S. Food and Drug Administration has yet to approve the procedure for these cases .

While the procedure is often done while the patient is awake, Robbie's tics were so severe that his doctors had to place Robbie under anesthesia.

Robbie's parents said they saw changes in Robbie almost instantly after the procedure. And, within a few weeks, Robbie's tics completely stopped.

Robbie, who once couldn't be left alone, now says he has gained a new sense of independence.

"I dreamed of it but I never thought it would come true," Robbie said. "It's turned my life around."

Copyright 2011 ABC News Radio







ABC News Radio