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TOURETTE'S SYNDROME FAQ
What is Tourette syndrome? A good, working, online definition of Tourette's syndrome is hard to come by, and much of what one finds online or in print may be out of date or less than accurate. This Tourette Syndrome FAQ (Frequently Asked Questions) addresses some of the common questions, myths and misconceptions about Tourette's syndrome.
How is Tourette's syndrome diagnosed? There are no clinical or medical tests for definitively ruling in or out Tourette's syndrome. The diagnosis is made based upon a history of persistent, frequently-changing motor and vocal tics which develop during childhood. Other secondary causes of tics (tourettism) and conditions which also include tics (such as autism spectrum disorders or stereotypic movement disorder) must be ruled out before conferring a diagnosis of Tourette syndrome, so physicians may do some screening tests or other medical testing, just to rule out other conditions if they are suspected. However, doctors who are very familiar with tic disorders, and in cases when a family history of tics/OCD can be verified, may be comfortable diagnosing Tourette's syndrome without doing other screening tests. Two commonly missed diagnoses in children with tics are autism and stereotypic movement disorder, and doctors who are not well versed in tic disorders may mistakenly label these conditions as Tourette's disorder.
If tests can’t confirm a Tourette Syndrome diagnosis, why do physicians sometimes perform an EEG or MRI? "At this time, the diagnosis of Tourette Syndrome remains primarily a clinical diagnosis arrived at by excluding other possible causes for involuntary movements and/or vocalizations that are seen. There is no blood test, MRI finding or other laboratory examination that confirms a TS diagnosis. However, it is the responsibility of a physician to rule out other potential causes of the symptoms based on taking a careful medical history and physical examination. For example, an EEG can be helpful in excluding seizures and an MRI of the brain could exclude a mass, when either of these possibilities is under diagnostic consideration." Ask the TSA Medical Advisory Board (PDF)
I understand Tourette syndrome involves motor and vocal tics, but we haven't noticed vocal tics. Is it still Tourette's syndrome? Often, both laypersons and medical personnel are under the mistaken impression that vocal tics must include such things as barking, grunting, or the involuntary utterances of obscenities (coprolalia), or must be somehow "bizarre." The more common vocal tics of Tourette syndrome include symptoms such as as sniffing, coughing, throat clearing, or a soft clicking noise. If you're not sure if vocal tics are present, you may be overlooking how simple vocal tics can be.
What are the most common tics? Because there are many muscles in the face, the most common tics involve the head. The least common tics involve the legs. Phonic or vocal tics usually appear after the onset of motor tics, but not always. Simple motor tics include eye blinking, eye movements, grimacing, nose twitching, mouth movements, lip pouting, head jerking, shoulder shrugs, arm jerks, tensing of the abdominal muscles, jaw snapping, tooth clicking, and neck stretching. Simple phonic tics include throat clearing, coughing, sniffing, sniffling, spitting, grunting, whistling, and other sounds. Click here for a description of tics and a list of common tics in Tourette's Disorder.
My Dr. won't diagnose Tourette's syndrome even though tics are present. Why? There are several reasons, and only a few of them make sense.
First, may be the doctor's misunderstanding of vocal tics, as discussed above. We encountered one psychiatrist who thought that a Tourette's syndrome diagnosis required that vocal tics be animal sounds, like barking, grunting, oinking or meowing. Some vocal tics are humming, coughing, sniffing, throat clearing, squeaking, snorting, whistling and coughing.
Second, may be the doctor's outdated thinking about the "significant distress" criterion of DSM-IV. The requirement that one must demonstrate "significant distress" or interference in one's life because of tics has been dropped from the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), but some physicians cling to the idea that Tourette's syndrome must involve significant impairment. Before you object to your doctors reluctance to diagnose Tourette's disorder officially, you may want to understand the insurance aspects involved and think about whether your child needs the diagnosis in order to receive, for instance, classroom accommodations, or whether your understanding and acceptance of a probable (yet unofficial) diagnosis is sufficient. A pamphlet about the medical insurance implications of a Tourette's diagnosis is available from the Tourette Syndrome Association (TSA). It may be helpful to understand the arbitrary distinctions between the diagnosis of Tourette's disorder, chronic tic disorder, and transient tic disorder.
Third, may be the requirement that tics be present for 12 months in order for Tourette's syndrome to be diagnosed. Some understanding of this requirement may help. Tic disorders are sub-classified into transient tic disorder, chronic tic disorder, and Tourette syndrome for the purposes of research and medical insurance coverage. Technically, since Tourette's syndrome is only diagnosed based upon symptoms, you have to have both motor and vocal tics for more than a year in order to be officially diagnosed. The hallmark of the tics of Tourette's syndrome is that they change in frequency, severity and anatomical location and are never absent for long periods. Transient tic disorders last less than a year, and are common in childhood. Chronic tic disorders last more than a year, and are vocal or motor, but not both. So, technically, if a person has had tics for 11 months and 20 days, he or she doesn't yet have Tourette syndrome. With ten more days of ticcing, he or she will, so take that with a grain of salt :-) Technically, if a person has 50 motor tics and no vocal tics, he or she doesn't have Tourette syndrome, although a person with two motor and one vocal tic may. Does that make sense? NO. It's all about which set of muscles decided to go on autopilot, and most researchers agree that transient tic disorder, chronic tic disorder, and Tourette's disorder are all part of the same spectrum anyway. They are all thought to come from the same, underlying, genetic difference, and all that divides them is a question of severity of tics. Technically, if a child has tics for 11 months, he or she has transient tics of childhood. But, when his younger sibling is diagnosed with Tourette's several years later, the transient tics of the older sibling must be viewed in retrospect as being part of the same spectrum of tic disorders. So, remember that the diagnostic criteria are only guidelines, and common sense applies ! What matters more is 1) are you giving the child or adult the appropriate supports regardless of the diagnosis, and 2) do you really need a diagnosis for medical reasons or classroom accommodations? Here is an excellent summary of these issues with respect to a Tourette syndrome diagnosis.
Fourth, what looks like tics may actually be stereotypies or self-stims, which are part of the autism spectrum. Autism is commonly misdiagnosed as Tourette's syndrome. The autism spectrum (including Asperger's and PDD - pervasive developmental disorders) includes tics as a feature of the condition. There are also many other secondary causes of tic disorders, known as "tourettism." There is also a condition called Stereotypic Movement Disorder, which can be confused with autism, tics and Tourette's. "Not all that tics is Tourette's," so if your physician will not diagnose Tourette's, you might want to question him or her as to whether the movements may be attributable to another diagnosis or another type of movement disorder. There are notable similarities and differences between tics, stims, and stereotypies of Tourette's syndrome, autism, and Stereotypic Movement Disorder. Some early research indicated a higher than expected comorbidity between autism and Tourette's; however, subsequent research has shown that the prevalence of Tourette's syndrome is higher than previously thought, which casts doubt on the hypothesized relationship between autism and Tourette's syndrome.
How many children have Tourette's syndrome? What percentage of the population is affected? What is the prevalence of Tourette's? Accurate figures are hard to come by because good broad-based population studies have not been done. Further, since tics tend to remit or subside as children mature, fewer adults have Tourette's, and population estimates on adults may underestimate the prevalence rates in children. Another complication in prevalence estimates is that most mild Tourette's syndrome may never come to diagnostic attention. The studies which have looked at prevalence of Tourette's have varying methodology, reflect different levels of ascertainment bias, and applied different criteria to the diagnosis of Tourette's syndrome. The bottom line is that you will encounter varying estimates of the prevalence from official sources. The National Institutes of Health estimates that 100,000 Americans have Tourette Syndrome, but according to the Tourette Syndrome Association, "studies suggest that the figure may be as high as one in two hundred if those with chronic multiple tics and/or transient childhood tics are included in the count." A 2001 study by Kurlan indicated that "over 19% of children in regular education classes have tics and ... almost 4% of children in regular education meet diagnostic criteria for Tourette's Syndrome." Recent studies have shown differing rates, depending on the methodology used, but the consensus of recent estimates is that the prevalence of Tourette's is between 1 and 10 per 1,000.
I hear that Tourette Syndrome is inherited, but no one else in my family has Tourette's. Why is that? There may be several factors at play here.
First, research shows that most tics improve significantly or remit as a child passes through adolescence. So, if Aunt Mary or Uncle Tom had tics of childhood, it's possible that they are no longer in evidence, and no one remembers that he or she had tics as a child.
Second, if mild tics are present in a family, family members may have grown accustomed to them, and simply stopped noticing them.
Third, environmental and non-genetic factors do impact upon the severity of the expression of tic disorders, so it is possible that others in the family had Tourette's syndrome, but it just wasn't noticeable. In our child's case, being exposed to a number of tragic deaths in rapid succession was the environmental "straw that broke the camel's back," and no other Tourette's was ever noticeable in our family.
Fourth, once you and your family begin to understand Tourette syndrome and question other family members, you may discover that cousin Billy did scrunch his nose and cough a lot as a child, but he outgrew it after his teen years. This is common.
Fifth, obsessive-compulsive disorder or traits are thought to be related to Tourette syndrome, so if some members of your family display obsessive-compulsive behaviors, those count :-)
How do you get Tourette's syndrome? What are the causes of Tourette syndrome? What are the genetics? Tourette's is thought to involve faulty regulation in the brain circuits between the frontal cortex and the basal ganglia. Studies have established beyond a doubt that Tourette's syndrome is genetic, but the exact mode of inheritance is debated. Tourette's syndrome was long thought to be transmitted via an autosomal dominant gene, and that is what you will most often find mentioned in the literature. But, don't believe everything you read. More recent studies suggest that the mode of transmission may be more complex. More than one gene may be involved, and it's possible that different genetic effects are involved in different families. Another confusing aspect is that you don't "inherit" Tourette's syndrome. You inherit a genetic predisposition or vulnerability to the condition. It is a condition of variable penetrance, which means that not everyone who inherits the gene will express severe symptoms, or even any symptoms at all. The expression of the severity of the condition can be influenced by an interaction between biological vulnerability and adverse environmental events. A number of studies have implicated non-genetic and environmental factors in the expression and severity of Tourette's syndrome. That means that, although psychosocial and adverse environmental factors don't cause Tourette's, they can impact the expression of the severity of the condition in those who are pre-disposed genetically to tics. Knowledge, understanding, and a supportive environment can help minimize the expression of the severity of the tics and the impact of tics on daily functioning.
How do I know which behaviors are due to Tourette Syndrome? Does my child have other diagnoses? Sorting out tics versus other behaviors isn't always easy. If you or your child seem to have only movements and vocalizations and you have few other concerns, chances are that Tourette syndrome is the only diagnosis. People with Tourette's may also have some obsessive-compulsive symptoms, so it can be good to learn enough about OCD to be able to recognize if that is an issue for you or your child. If you have concerns beyond tics, obsessions and compulsions, then spending some time in Leslie Packer's TS Plus website will be a good idea. In the cases when behavioral disorders are associated with tics or Tourette's, it is important to focus on prioritizing and treating the behavioral disorders first, as they typically cause more impact on functioning than tics.
My child seems very angry and oppositional. Is that related to Tourette's? Your child may be angry because of living with a misunderstood condition involving movements, obsessions and compulsions, and may be teased a lot. But, in some cases, people may be referring to anger beyond that of being misunderstood and teased. Recent research shows that it is not usually related to Tourette syndrome. Angry, oppositional, "rage-like" behavior may be related to bipolar disorder, ADHD, developmental disorders, or to a combination of a number of other diagnoses, but it is not related specifically to Tourette Syndrome. It is important that you identify and address the other diagnoses that may be leading to these behaviors. For instance, in the case of bipolar, early diagnosis is essential to a positive prognosis, and the wrong medications may be used - complicating the prognosis - if bipolar remains undetected. Here is further information about "rage" and Tourette's, and information about bipolar disorder, including the similarities and differences between AD/HD and bipolar.
We just found out about Tourette syndrome. What should I tell the school? If you are brand new to the diagnosis of Tourette Syndrome, for now, you've got a lot of learning to concentrate on, and several decisions (what to tell the school, and whether to medicate) may be premature. If your child has classroom difficulties, you will need to decide how to approach the school, but I personally advocate that you become familiar and comfortable with Tourette's before approaching the school, possibly in your current, panicky state. The better informed you are, the better presentation you can make to your school, and the better advocate you will be for your child. If your child is not having an immediate crisis, take it slow, ask questions online, learn more about TS, and approach the school as soon as you are ready and informed as to how to advocate for your child, and whether or not classroom accommodations are even necessary. Be cautious with any pre-packaged lists of accommodations or school information, as Tourette syndrome varies greatly from individual to individual, and many of those lists may raise unnecessary concern in your child's teachers -- if you have to present information to the school, type up your own list of selected information that applies to your child. A good source of educational advocacy information is Leslie Packer's TS Plus website.
Will my child need accommodations in school? You are a good judge of this, but it is a question best addressed once you understand Tourette's a bit better. In our case, no special accommodations have been necessary, and I know scores of similar children with Tourette Syndrome. At the beginning of the year, I meet with the teachers and discuss my child's unique learning style, and a specific mention of Tourette syndrome is not always necessary or essential to the conversation. You are the best judge of your child's situation, but take some time to understand TS and what accommodations may be necessary. Each child with Tourette Syndrome is unique, and all that you read may or may not apply to your child.
I hear a lot about PANDAS. What is it, and should I have my child tested? PANDAS may be a factor for a small group of children with tics and obsessions, but there is a great deal of misinformation in this area. See my PANDAS webpage for more information.
I don't understand why some literature says Ritalin causes tics, and other literature says it doesn't. Should my child take Ritalin? Some older studies indicated that psychostimulants (such as Ritalin) were contraindicated when tics or a family history of tics were present, as they were thought to exacerbate (not cause) tics. Newer studies have shown that stimulants may be cautiously used when tics are present, but the decision to use stimulants remains controversial. Here is a summary of all of the recent research on the relationship between tics, Tourette's and stimulants (Ritalin, Concerta, adderall, etc.) and information about the origin of the myth about Tourette's and Ritalin.
I don't understand why some literature says Tourette Syndrome is a lifelong, chronic condition, and other says most tics often remit or improve in adulthood. What can I expect? Again, this is just another case of older studies (which are still often quoted) versus newer studies, which show that the vast majority of tics remit or improve after adolescence. No one can predict the outcome for any individual, but the research shows that prognosis is optimistic and that most tics remit or improve.
What about alternative treatments? There are many. Most of them are unproven, some of them may be dangerous, but some parents swear by them. One organization has been involved in advancing the notion, based on biased and unscientific internet surveys, identifying and treating "tic triggers" can help lower or stop tics. This approach seems to ignore the basic fact that tics do wax and wane independently of treatment or "triggers." Understanding and acceptance of the condition is the BEST alternative treatment. Focusing on trying to "cure" your child may keep him or her under the microscope of parental scrutiny, and leave him or her with a general feeling of lack of parental acceptance, so balance in approaching any treatment (alternative or conventional) is wise. Here is a post about Complementary and Alternative Medicine as it relates to the Tourette's "parental microscope of scrutiny."
Tourette Syndrome: Myths and Facts, one of a collection of excellent online articles from the Tourette Syndrome Foundation of Canada.
Additional Tourette's Frequently Asked Questions from the Tourette Syndrome - Now What? message board.
Tourette Syndrome Fact Sheet, from the NINDS
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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