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When you have Tourette Syndrome, you get used to the physical and vocal tics that others often view as faux pas. I know, I have it. When I interviewed 14-year-old Andrew Youngen, who participated in a study designed to find out if the neurological disorder affects the brain in other ways, I began by asking him to tell me some things about himself for background. I wanted to see if he would mention his Tourette Syndrome in his description of himself. He didn't. He told me how he enjoys coin collecting, but in a way that I thought was pretty unique-- he makes sure to get one of those kitschy-touristy penny presses at every attraction he visits. But, while people with Tourette may not think of the neurological disorder as one of the most important parts of themselves, having it has made Andrew into a sort of ad-hoc Tourette ambassador. He does "in-service" visits to classrooms to explain that his sudden or repetitive motions and sounds are involuntary. "After we watch the video, I say in my own words what Tourette is and how it affects me, and I can't help anything about it… And then they usually have some questions, like, actually last year, I got a question, 'What can we do to help?'" "It was the first time I've ever gotten that, it was a very nice one," Andrew says. © ScienCentral, 2000-2007

Jennifer S. Altman A stand-up comedian, a ventriloquist who performs for children and a high school sophomore are among the people who share their stories about living with Tourette’s syndrome in the latest installment of Patient Voices. The often misunderstood condition can cause a range of tics, including sudden jerking movements, grunting, snorting and clearing the throat, which typically first appear during childhood. This week, Dr. Robert A. King and Dr. James F. Leckman of the Yale School of Medicine join the Consults blog to answer readers’ questions about Tourette’s syndrome. “Once thought to be a rare, severe and lifelong condition, Tourette’s is now known to be relatively common, affecting up to one percent of school-age children,” Dr. King says. “Symptoms are often mild and can spontaneously, and markedly, improve by later adolescence.” Dr. King is professor of child psychiatry and medical director of the Yale Child Study Center’s Tourette’s/Obessive-Compulsive Disorder Clinic. Dr. Leckman is the Neison Harris Professor of Child Psychiatry and Pediatrics at Yale, where he also serves as the center’s director of research. Both doctors have been intensively involved in the clinical care of individuals with Tourette’s syndrome and early onset obsessive-compulsive disorder for more than two decades. Do you have a question about Tourette’s syndrome? Post your comments and questions in the comments box below. Drs. King and Leckman will be responding to readers next week. Copyright 2010 The New York Times Company

By THE NEW YORK TIMES Dr. Robert A. King and Dr. James F. Leckman of the Yale School of Medicine recently joined the Consults blog to answer readers’ questions about Tourette’s syndrome. Here, Dr. Leckman and Dr. King respond to readers asking about living with the strange movements, tics and vocalizations of Tourette’s, which can be socially difficult and, in some cases, lifelong. Do You Tell a Teacher About Tourette’s? Jen from Brookline, Mass., asks: My daughter started exhibiting tics at age 2 and was diagnosed with Tourrette’s at age 3. Now she’s 5 and will start kindergarten in September. I wrestle with whether to tell her teachers about it right off the bat, or wait and see if it becomes an issue. Her symptoms, so far, have been mild and not always evident. I would hate for her to be “labeled” unnecessarily (with whatever negatives come with that), but on the other hand, I feel that not being forthright is dishonest, and could equally be a disservice to my daughter. Any advice from those who have recently BTDT? Dr. King and Dr. Leckman respond: Tics wax and wane. For some, the tics will subside early in life. For others, the worst-ever tics occur at around 10 years of age or later in life. Unlike your daughter, some children with Tourette’s who begin school have had bad periods during which the tics are severe. It is likely that such children will have bad periods in the future. If the tics are pronounced enough that a teacher or peers are likely to notice and comment, it is better to be proactive and to be prepared. Copyright 2010 The New York Times Company

By THE NEW YORK TIMES Dozens of readers had questions about Tourette’s syndrome, the odd and poorly understand disorder that causes uncontrollable tics and vocalizations, after the disorder was profiled in a recent Patient Voices series. Here, Dr. Robert A. King and Dr. James F. Leckman of Yale School of Medicine respond to readers wondering whether Tourette’s is inherited and how common the disorder is. Is Tourette’s Inherited? My daughter is engaged to someone with Tourette’s. I worry about their children inheriting Tourette’s. What is the likelihood of that occurring? Anonymous, San Francisco Dr. King and Dr. Leckman respond: Tourette’s likely has genetic determinants, but they may vary from family to family. When a parent has Tourette’s, sons have a higher risk of inheriting the condition than daughters. On average, about 20 percent of male offspring will have Tourette’s, compared to only about 5 percent of female offspring. The rates for a chronic motor tic disorder are a bit higher: 30 percent of the sons and about 9 percent of the daughters will have such a condition. In contrast, the rates are reversed for obsessive-compulsive disorder, or O.C.D., which sometimes accompanies Tourette’s, with 7 percent of sons and 15 percent of daughters developing symptoms of O.C.D. These are all approximate figures. Copyright 2010 The New York Times Company

By Jenette Restivo [ABCNEWS.com] B O S T O N, Dec. 27 — While most of us think of the typical Tourette's patient as the rare eccentric who barks obscenities and jerks their arms wildly, a recent study says much more subtle symptoms of Tourette's and related tic disorders are far more common than once thought. "[Kids with mild tics] are at a higher risk for developing future school problems. This is a way of identifying children ahead of time so they can be monitored — a clue to how the child's brain is organized," says lead study author Dr. Roger Kurlan, director of the Tourette's Syndrome Clinic and the Cognitive and Behavioral Neurology Clinic at the University of Rochester in New York. Tip of the Iceberg To determine the prevalence of tics and Tourette's Syndrome in school-aged children, Kurlan looked at a group of 1,600 children in both regular and special education classrooms in Rochester. Copyright © 2002 ABCNEWS Internet Ventures.

USF study suggests new targets for antidepressants Tampa, FL— A well-tolerated drug that blocks nicotine receptors in the brain appears to relieve depression and mood instability in children and adolescents with Tourette's syndrome, a preliminary study by University of South Florida College of Medicine researchers has found. The multicenter, placebo-controlled study of the drug mecamylamine is published in the latest issue of the journal Depression and Anxiety. "These preliminary findings are consistent with anecdotal observations that mecamylamine stabilizes mood," said lead author Douglas Shytle, PhD, assistant professor in the USF Departments of Neurosurgery and Psychiatry. "In addition, this is the first clinical evidence supporting the hypothesis that many antidepressants function, in part, by inhibiting nicotinic receptors."

By BENEDICT CAREY The visions seem to swirl up from the brain’s sewage system at the worst possible times — during a job interview, a meeting with the boss, an apprehensive first date, an important dinner party. What if I started a food fight with these hors d’oeuvres? Mocked the host’s stammer? Cut loose with a racial slur? “That single thought is enough,” wrote Edgar Allan Poe in “The Imp of the Perverse,” an essay on unwanted impulses. “The impulse increases to a wish, the wish to a desire, the desire to an uncontrollable longing.” He added, “There is no passion in nature so demoniacally impatient, as that of him who, shuddering upon the edge of a precipice, thus meditates a plunge.” Or meditates on the question: Am I sick? In a few cases, the answer may be yes. But a vast majority of people rarely, if ever, act on such urges, and their susceptibility to rude fantasies in fact reflects the workings of a normally sensitive, social brain, argues a paper published last week in the journal Science. “There are all kinds of pitfalls in social life, everywhere we look; not just errors but worst possible errors come to mind, and they come to mind easily,” said the paper’s author, Daniel M. Wegner, a psychologist at Harvard. “And having the worst thing come to mind, in some circumstances, might increase the likelihood that it will happen.” Copyright 2009 The New York Times Company

By Scott O. Lilienfeld and Hal Arkowitz On May 22, 2001, radio talk show personality Laura Schlessinger, better known as Dr. Laura, received a call from a woman who was distressed by her sister’s decision to exclude their nephew from an upcoming family wedding. When the caller mentioned that the boy suffered from Tourette’s disorder (also sometimes called Tourette syndrome), Dr. Laura berated her for even thinking that it might be appropriate to invite a child who would “scream out vulgarities in the middle of the wedding.” As we’ll soon explain, Dr. Laura’s comments embody just one of several common myths regarding Tourette’s. Tourette’s disorder is the eponymous name for the condition first formally described in 1885 by French neurologist Georges Gilles de la Tourette, who dubbed it maladie des tics (“sickness of tics”). According to the current edition of the American Psychiatric Association’s diagnostic manual, Tourette’s disorder is marked by a history of both motor (movement) tics and phonic (sound) tics. Motor tics include eye twitching, facial grimacing, tongue protrusion, head turning and shrugging of the shoulders, whereas phonic tics encompass grunting, coughing, throat clearing, yelling inappropriate words and even barking. Some tics are “complex,” meaning they are coordinated series of actions. For example, a Tourette’s patient might continually pick up and smell objects or repeat what someone else just said (echolalia). Often a tic is preceded by a “premonitory urge”—that is, a powerful desire to emit the tic, which some have likened to the feeling we experience immediately before sneezing. Tourette’s patients typically report short-term relief following the tic. © 1996-2009 Scientific American Inc.

by Greg Miller People with Tourette syndrome are plagued by unwanted movements and verbal tics that run the gamut from extra eye blinks and grimaces to involuntary grunts or even cursing. Although the disorder tends to run in families, little is known about its genetic basis. Now researchers have found a mutated gene that appears to cause the disorder in one extremely unusual family with nine afflicted individuals. Although this mutation is not the cause of the vast majority of Tourette syndrome cases, it may push researchers to investigate a mechanism—and potential treatments—they otherwise would not have considered. Since the French neurologist Georges Gilles de la Tourette first described his namesake condition 125 years ago, scientists have puzzled over the cause. Much recent attention has focused on a brain region called the basal ganglia that is involved in repetitive behaviors and on the neurotransmitter dopamine. In 2005, a team led by child psychiatrist and geneticist Matthew State of Yale University School of Medicine, reported one of the first genetic clues to the disorder, a mutation in a gene called SLITRK1 that seems to be responsible for a rare handful of cases. But the function of SLITRK1 and its contribution to Tourette syndrome are still largely a mystery. In the new study, State and colleagues examined a family in which the father and all eight offspring (six sons and two daughters) have the syndrome. Extensive genetic detective work led them to a mutation in a gene called HDC, which encodes L-histidine decarboxylase, an enzyme involved in the production of histamine, a signaling molecule with a wide variety of roles throughout the body. The same mutation was present in all members of the family who had Tourette but was absent in thousands of DNA samples from control subjects, who included unrelated people with similar ethnic backgrounds as well as a group of 720 Tourette patients, the researchers report today in The New England Journal of Medicine. The mutated version of the HDC gene likely results in a truncated version of the enzyme, which would result in reduced histamine levels, State says. © 2010 American Association for the Advancement of Science

Characterized by sudden jerking movements and uncontrollable tics and vocalizations, Tourette’s syndrome is a strange, often misunderstood condition. What is it like to live without full control of your body? Seven men and women talk about living with the twitches of Tourette’s. What is it like to live with a chronic disease, mental illness or confusing condition? In Patient Voices, we feature first person accounts of the challenges patients face as they cope with various health issues. Interactive Feature Patient Voices: Migraine Almost 30 million Americans suffer from migraines. What is it like to live with migraine pain? Six men and women speak about their experiences. Copyright 2010 The New York Times Company

By Nathan Seppa An intensive course of behavioral therapy can limit the verbal and physical tics that plague some children with Tourette disorder, a new study finds. This form of therapy, in which a child learns simple ways to derail tics, led to improvement in more than half of children treated, scientists report in the May 19 Journal of the American Medical Association. “I think this is groundbreaking,” says clinical psychologist Martin Franklin of the University of Pennsylvania in Philadelphia, who didn’t participate in the trial. “Clinically, we now have pretty powerful evidence of the efficacy of a behavioral treatment in this disorder.” Tourette disorder is characterized by short, rapid physical or vocal tics that can take the form of jerking motions, blinking, grimacing, blurting out words or throat clearing. These tics are brought on by urges. And much as a cigarette satisfies a smoker’s need for nicotine, the tics seem to resolve these urges, but at a cost. People with Tourette disorder, which starts in childhood and affects about six in 1,000, can face isolation and social stigmatization. “The urge-tic-relief cycle becomes automatic over time” in Tourette disorder, says study coauthor John Piacentini, a clinical psychologist at the University of California, Los Angeles. “We want to slow it down and make it less automatic.” © Society for Science & the Public 2000 - 2010

Researchers have identified the first gene mutation associated with Tourette syndrome - opening a new avenue for understanding the complex disorder that causes muscle and vocal tics. Until now, causes of Tourette syndrome (TS), which afflicts as many as 1 in 100 people, have eluded researchers because the disease appears to be caused by subtle mutations in many genes. The researchers published their findings in the October 14, 2005, issue of the journal Science. Matthew W. State of the Yale University School of Medicine was senior author of the paper. His research was supported by a Howard Hughes Medical Institute institutional award to Yale that was used to support early research by promising scientists at Yale. According to State, early theories suggesting that a single gene mutation causes TS have proven incorrect. “There has been an evolving hypothesis about Tourette syndrome being a much more complex disorder,” State said. “I think there is general consensus at this point that there are likely to be multiple genes, likely interacting, and probably different sets of genes in different people, that contribute to TS.” The notion of multiple genes is borne out by the complex phenotype of the syndrome, which is often associated with obsessive-compulsive disorder, attention deficit hyperactivity disorder, or depression, said State. © 2005 Howard Hughes Medical Institute.

DNA defect may cause involuntary physical and verbal tics. JOHN WHITFIELD Researchers have found a gene mutation that seems to lead to the mental disorder Tourette's syndrome. The gene is normally switched on in nerve cells; its disruption might make them hyperactive. The gene has been detected in only one family so far. Studies of more people with Tourette's syndrome are needed to confirm its involvement in the condition. "This gene might be involved in some people with Tourette's syndrome, but it won't be in all of them," says the leader of the team that found it, Ben Oostra, of Erasmus University, Rotterdam, the Netherlands. © Nature News Service / Macmillan Magazines Ltd 2003

By Mike Stobbe ATLANTA - Tourette's syndrome occurs in 3 out of every 1,000 school-age children, and is more than twice as common in white children as in blacks or Hispanics, according to the largest US study to estimate how many have the disorder. Tourette's - known for its physical tics and, in some cases, shouted obscenities - has long been considered a rare condition. The new number means it's more common than some past estimates, but confirms that it's far less common than other neurological conditions such as autism or attention deficit hyperactivity disorder. The racial gaps are probably the most surprising finding, the study's authors said. "Prior to this, we really had very little information about minorities," said Lawrence Scahill, a Yale University researcher. The study was released yesterday. It's not clear why whites have a higher rate or whether future studies will find the same disparity, specialists said. Some suspect it has less to do with genetics than with a difference in access to medical care or in attitudes about whether repetitive blinking or other tics require medical care. The study, led by the Centers for Disease Control and Prevention, estimates there are about 150,000 US children with Tourette's. The researchers also found that: Most cases were mild, but 1 in 4 were - in the parent's opinion - moderate or severe. Boys had a rate three times higher than girls. © 2009 NY Times Co.

By Anne Miller Glass shards glistened sharply in a pool of water on the kitchen floor. My mom assured my fiance, Michael Davoli, that the old cheap glass didn't matter, but he still looked shell-shocked. He was always so careful to place drinks safely in front of himself: Anything too near his hands could be toppled. He helped my mother pick up the pieces and said he hadn't knocked over a glass in years. Such is life with Tourette's syndrome. Most people know the stereotype of unpredictable and uninhibited cursing or barking. Those symptoms do exist, for some people. But the truth is much more complicated. Michael, who has been my husband since August, doesn't curse unless he wants to. But as with the majority of people with Tourette's, there are myriad ways his inability to control some of his movements affects how he navigates his days. How and why people develop Tourette's remains a mystery. Research indicates a genetic tie: Those with Tourette's have a 50 percent chance of passing it to their children, and it's not unusual for someone with Tourette's to have a relative who also has the syndrome. The condition typically manifests in grade school, often with rapid eye blinks, and more often in boys than in girls. Medical experts estimate that as many as one in 100 people suffer from Tourette's. It is also associated with creative personalities: Composer Wolfgang Amadeus Mozart, writer Samuel Johnson and jazz great Thelonious Monk may have had it. In the sports world, Jim Eisenreich, who won a World Series with the Florida Marlins in 1997, and Tim Howard, a goalie on the U.S. national soccer team, live with Tourette's. © 2010 The Washington Post Company

There is growing evidence that a common childhood throat infection increases the risk of neurological disorders such as Tourette's syndrome. Scientists found children with such disorders were twice as likely to have had recent streptococcal infections than their healthy peers. Researchers at Seattle's Center for Health Studies suggest the body's response to the infection may be key. But they tell the journal Pediatrics, that it is just one potential trigger. OCD is more commonly associated with adults, but the researchers say it affects around 1 to 2% of school-age children - and transient tics can affect 10 to 25% of primary school age children. Tourette's - a neurological disorder characterized by tics, involuntary vocalization, and, in some cases, the compulsive utterance of obscenities - affects around one in every 100 children to some degree. Scientists had suspected there may be a link between the streptococcal infection and neurological disorders. It has been suggested that the body's natural response to infection, where particular antibodies are produced and directed to parts of the brain, might be linked in some way to these disorders. However, it is not clear why most of the millions of children who have bacterial throat infections each year do not develop such disorders. (C)BBC

By JANE E. BRODY A woman who lived for years in my neighborhood periodically appeared at a window and shouted obscenities into the street. Passers-by were appalled, but I felt what had to be the painful humiliation of someone who had no ability to control this seemingly antisocial behavior. I realized that the woman was afflicted with Tourette's syndrome, a lifelong neurological disorder with symptoms that contrary to popular belief, only rarely include the involuntary shouting of obscenities. I now know that the disorder is associated with a wide range of confusing symptoms that often result in delays in diagnosis and treatment that can last years. The problem was eloquently described in a two-part article last August in Contemporary Pediatrics. In his report, Dr. Samuel H. Zinner, a pediatrician at the University of Washington specializing in developmental and behavioral problems, points out that the syndrome "often goes undiagnosed or misdiagnosed." "Misconceptions about this tic disorder are customary," he adds, "with the syndrome often perceived as characterized by bizarre, fitful behaviors or comical outbursts of uncontrollable profanity." Copyright 2005 The New York Times Company

By ANNETTE RACOND Certain moments in my life are like sharply focused snapshots that never fade. I was in my flannel pajamas watching TV in my parents' bedroom in Douglaston, N.Y., the day Neil Armstrong stepped onto the moon. More than a decade later, when news broke of John Lennon's death, I was cramming for a test in my dorm room at Boston University. On April 1, 2004, I had another such moment: My mother called to tell me that Jeff Matovic, a 31-year-old husband and father from Lyndhurst, Ohio, had become the first person with Tourette's syndrome in the United States to be treated with deep brain stimulation. His doctors say the procedure has so far relieved Mr. Matovic of the tics that came with his disorder. He is no longer a constant prisoner to the abrupt and repetitive muscle movements and vocalizations that made his life unbearable. Mr. Matovic can now experience the beauty of stillness. As a fellow Tourette's syndrome sufferer, Mr. Matovic's story has given me hope that maybe I, too, can be freed from my tics, twitches, bobs, nods, grunts, squirms, hiccups and jolting motions. Even though I exhibited symptoms of Tourette's syndrome at age 6, the disorder was not diagnosed until I was 28. Copyright 2004 The New York Times Company

Doctors in the US have carried out brain surgery on a 31-year-old man in a bid to cure him of Tourette syndrome. Jeff Matovic from Ohio has had the disorder, which is characterised by uncontrollable vocalisations and movement, since he was six. Doctors used a technique called deep brain stimulation, which involves placing tiny electrodes inside the brain to regulate electrical activity. They say his symptoms have all but disappeared since the operation. "We were genuinely amazed at the patient's response," said Dr Robert Maciunas, who carried out the surgery. Deep brain stimulation has been used on patients with Parkinson's disease, to help reduce the shaking associated with the condition. The electrodes are placed deep inside the brain beside the thalamus, which controls movement. (C)BBC

It may not strike twice but lightning can have long-term effects People who are struck by lightning could go on to develop rare disorders of the nervous system, say scientists. Research suggests some lightning-strike victims show signs of involuntary movement disorders (IMDs), such as uncontrollable blinking, tic-like movements resembling Tourette's syndrome, hand tremors and muscle spasms. These type of complications are normally found in people who have experienced other types of electric shocks, which damage the brain and the central nervous system. However researchers from the Lightning Data Center of St Anthony Hospital in Denver, USA, say they found four lightning-strike patients who developed similar symptoms. (C) BBC

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