Frequently Asked Questions and Facts about
Tourette Syndrome

What is Tourette Syndrome?
      A: Tourette Syndrome or TS is an inherited neurological disorder characterized by multiple tics–involuntary, fast, sudden movements or vocalizations occurring repeatedly and in the same way. It is more common in boys than it is in girls, and manifests itself in the form of facial and/or body "tics." Verbal tics are much less common in occurrence, but because of the disturbance and disruption verbal tics often cause in public, they are the most common symptom the unknowing public associates with the disease. It can strike roughly 1 in 1000 children, usually between the ages of 6 and 9, but can occur as late as 21 years of age.

Q: What are the symptoms of TS?
      A: Typical symptoms of TS are simple motor tics, such as excessive/rapid eye blinking, head jerking, nodding, facial grimacing, shoulder shrugging, crotch touching and other muscle tics.  Simple vocal tics, such as sniffing, snorting, throat clearing, barking, sqeeking or other kinds of repeated vocal noises  and tongue clicking, are also common. Complex motor tics include jumping, smelling things, twirling, touching other people, and, in rare cases, self-injurious actions such as lip biting and hair pulling. Echolalia (repeating what someone else said) and coprolalia (an outburst of socially inappropriate words or phrases) are two examples of complex vocal tics.  Tic symptoms in individuals with TS increase and decrease in severity, as well as change in frequency, type and location over time.  

Q: What is a motor tic?
     A:Motor tics are involuntary movements of any muscle, ranging from sudden, rapid, jerking motions, to slower stretching movements. Examples include rapid eyeblinking, mouth opening, facial grimacing, horizontal head movements (hair out of eyes tic), shoulder shrugging, crotch touching, rapid extension of the arms or legs. They include other behaviors such as tugging at clothing, licking lips, sticking the tongue out, eyes glancing up, widening eyes, and stretching movements. They often tend to be repetitious and ritualistic.

Q: What is a vocal tic?
     A: Vocal tics include throat clearing, grunting, snorting, squeaking, sniffing, coughing, humming, barking, spitting and virtually any repetitious vocal noise that is not a recognizable word. They are also repetitious in nature and vary in intensity, sometimes being said just under the breath, other times loud and explosive in nature.

Q: What is coprolalia?
     A: Coprolalia is the involuntary, repeated expression of swear words. This is distinct from simple swearing in that the same words tend to be said over and over in a compulsive, repetitious fashion, not spoken in anger. The most common word is "fuck", but virtually any swear work can be heard. Coprolalia is not necessary for the diagnosis of TS. Less than 30% of TS patients have this symptom.

Q: When do symptoms of TS first appear?
      A: Usually, symptoms of TS first appear between the ages of 5 and 15 years of age.

Q: What causes TS?
      A: The exact cause of TS is still not known, however, research suggests there is an abnormality in the metabolism of dopamine, serotonin and/or norepinephrine–chemicals in the brain that carry signals between nerve cells.

Q: How is TS diagnosed?
      A: There is no test to definitively diagnose TS. Some doctors will perform blood tests, electroencephalographs (EEGs), and brain imaging tests to eliminate other diseases that can look like TS. However, most doctors diagnose TS clinically through observation and by taking a complete history of their patients. The criteria commonly used to diagnose TS include:

        - Multiple motor and one or more vocal tics present at some time. (They do not have to occur at the same time.)

        - The occurrence of tics several times a day, typically in bouts, every day or intermittently for at least one year.

        - During this time, there was never a tic-free period for more than 3 months.

        - The tics appear before the age of 18.

Q: Is TS a genetic disorder?
      A: In most cases, TS is an inherited disorder. The chance that a parent with TS will pass tic symptoms to their child is estimated at about 40% to 50%. Sons of a parent with TS are about 4 times more likely to have tics in comparison to daughters. In many cases, however, the children of affected parents will have a mild form of the syndrome. Statistics indicate that only about 10% of the children who inherit the gene will have symptoms severe enough to require medical treatment.

Q: Is TS a disease that gets progressively worse?
      A: TS is not a progressive disease like multiple sclerosis or Parkinson disease. In fact, in most cases, symptoms are most severe between the ages of 7 and 14 and lessen during adolescence. Furthermore, people with TS can anticipate living normal life spans.

Q: Are there other conditions that frequently occur with TS?
      A: Although not everyone with TS has other conditions, there are several disorders that are much more common in people with TS compared to those without it. These include:  Short attention span, Hyperactivity, Obsessive-compulsive behaviors, Learning disabilities or dyslexia, Behavioral problems, Short temper, confrontive and oppositional, unable to take no for an answer, tantrums over nothing, Phobias, Anxiety attacks, Depression, Inappropriate sexual behavior.

Q: Is there any Medications that can help?
      A: No one medicine has been invented specifically for TS. The pharmaceuticals that have been found to minimize tics are normally used to treat other serious illnesses (i.e., high blood pressure). Hence, these drugs can often cause side effects or present risks serious enough to cause some TS patients to opt for living with the tics rather than take medication.Fortunately, many TS patients are not severely disabled by their tics or behavioral symptoms and do not require medications. However, when symptoms interfere with the normal functioning of a patient's life, medications to control the most disturbing symptoms are recommended. One of the greatest challenges healthcare providers face in treating individuals with TS is finding a safe and effective medication that treats both the tic symptoms as well as the emotional and behavior disorders associated with TS. Many patients have a favorable response to these medications while other patients do not. In some cases, patients may experience side effects that are more problematic than the tics. Currently, research is underway for a new medication to treat TS. Consulting with a physician is the appropriate way to identify the correct medication.

Research on over 3,5000 TS patients has indicated that the drug of first choice is Catapress (clonidine) given by skin patch. The usual starting dose is 1/4 to 1/2 patch per week. If this is not effective the dose is increased to 1/2 the second week, and 3/4 to 1 patch the third week. The eventual dose is usually between 1/4 and 2 patches. Sometimes the patch causes local skin irritation. Two way to combat this are by moving the patch mid-week to another site, and coating the skin first with a steroid cream or spray. If these are not successful and the medication is working it may be necessary to switch to oral clonidine 1/4 to 1/2 tablets 4 times a day or to a clonidine cream.

The advantage of clonidine is that it can treat all the symptoms of TS - the tics, the ADHD, obsessive-compulsive behaviors, oppositional and other behaviors. The major side effect is tiredness if the dose is too high.

A second effective medication for tics is Haldol (haloperidol). The doses required are often relatively small. Treatment is usually begun with 0.5 mg each evening and a week is allowed to pass to determine if this dose is sufficient to control most of the tics. If it is not, 1.0 mg is given for the next week. In this manner the dose is slowly increased until there is either a 70 to 90% improvement in the tics or side effects are too severe to continue increasing the medication. The major side effect of haloperidol is tiredness. Additional problems seen in some individuals are depression, muscle spasms resulting in headaches, stomach aches or other muscle aches, or eyes rolling back. Some individuals feel very restless on the medication. Some of the side effects may be controlled with Cogentin (benztrophine) 1 mg once to three times a day. Weight gain may be a troublesome side effect. Orap (pimozide) is very similar to haloperidol. Some patients prefer it since it may have fewer side effects than haloperidol. In others haloperidol may be effective when pimozide is not. These medications are effective in about 80% of TS patients. Prolixin and Risperidal are also useful for treating tics.

In addition to these there are a number of other medications that can be useful if the above are not effective.  Remember to consult with your neurologist/doctor before starting any new drug.  Ask questions as to: What is this medication?  What is it prescribed for? How can it help? and any others that you may have.

Q: Will My Tics Ever Go Away?
      A: Fortunately, for some who suffer with Tourette Syndrome, the disorder and its tics disappear sometime between the ages of 20 and 24 -- almost as quickly as the tics first appeared in childhood. Most are not this lucky. But for anyone that has lived with Tourette's, regardless of age, this disorder can often wreak havoc on the mind and personality of the victim, and cause pressure and stress in the immediate household. Children struck by Tourette's often suffer from emotional problems, embarrassment, humiliation, various degrees of depression and loss of self-esteem. And for many Tourette victims, even the lucky ones who live to see their tics go away, the teasing and humiliation they experienced during their youth and the loneliness or isolation they felt, often produces emotional scars and self-esteem destruction that can last a lifetime.

Q: Where Can I Find a Doctor That Treats Tourette Syndrome Patients?
      A: This is by far our most frequently asked question. The best and quickest way to find a doctor in your area is to call your local chapter of the Tourette Syndrome Association. They keep a list of doctors in their locale that treat Tourette Syndrome patients. You can find the TSA chapter nearest you by clicking here. We have not had good luck at getting parents to forward us doctor recommendations.

Q: What is Attention Deficit Hyperactivity Disorder?
      A: Attention deficit hyperactivity disorder (ADHD) refers to a disorder characterized by inattention and impulsivity. Individuals have difficulty sticking with one thing long enough to finish it, seem not to listen, are easily distracted, have difficulty concentrating, often act before thinking something things through, have difficulty organizing their work need a lot of supervision, and are very impatient. Often times such individuals are also hyperactive and run and climb on things excessively, have difficulty sitting still and staying in their seat, and move about in their sleep a great deal. This disorder used to be called minimal brain damage (MBD) or just hyperactivity. However, since there was no brain damage and since inattentiveness was at the core of the problems, it is now known as ADHD. Tourette syndrome and ADHD are intimately linked. Studies at the City of Hope indicate that 50 to 80% of TS patients have ADHD. Similar figures have been reported in other studies. The ADHD phase of the TS usually precedes the onset of motor or vocal tics by an average of 2.5 years, although sometimes the two come on together. We believe that TS is essentially ADHD with tics.

Q: What is Obsessive-Compulsive Behaviors?
      A: One of the most common associated features of TS is the presence of obsessive-compulsive behaviors. These include touching things until they feel just right, touching things a certain number of times, often an even number of times, needing to touch something with both hands (evening-up), smelling things, touching themselves especially in the crotch, having to put things in just the right place, counting objects, having to do things in a certain sequence, and inability to give up a certain thought (perseveration). Compulsive exhibitionism is present in a small percent (5%) of individuals. When severe, the compulsive behaviors can be the most debilitating aspect of TS.

Q: What is Echolalia and Palilalia?
      A: Echolalia is repeating over and over words that others have spoken. Palilalia is repeating over and over words that the person themselves have spoken. These symptoms are present in about one-third of TS patients.

Q: Does TS patients have Learning Disabilities?
      A: The ADHD is usually associated with varying degrees of learning disabilities. About a third of TS children require some type of special class to help with their learning handicap. Among TS patients 42% have significant problems retaining information compared to 8% of unaffected children.

Q: My son has Dyslexia, what is it?
      A: Dyslexia is defined as a significant reading disability (two or more years behind peers) in the presence of normal intellectual abilities. Dyslexic individuals have long term difficulties with reversing letters, numbers and words and other problems with written material.

Q: My daughter is stuttering, should I be concerned?
      A: Many TS patients have various types of speech problems, including stuttering, stammering, lisping, and talking so fast they are difficult to understand. Among TS patient 31% have had some problems with stuttering compared to only 6% of unaffected children.

Q: Problems with Math and Writing in TS patients?
      A: TS children often have problems with reading and or with math, especially multiplication and division. Because of poor fine motor coordination, they also have problems with handwriting.

Q: My son has problems with tests, is this Test Anxiety?
      A: Parents often comment that their TS children seem to know their school work very well but do poorly on examinations. This is often due to test anxiety. When graded on the basis of none, moderate and severe, 17% of TS children had severe test anxiety compared to none of the unaffected controls. TS children also do poorly on timed tests which further exacerbate their test anxieties.

Q: Conduct Disorder in TS patients?
      A: Conduct and discipline difficulties in TS patients consist of some of the following problems: compulsive lying, stealing, everything being a confrontation, short temper, frequent temper tantrums, rage attacks, seeming to be full of anger, compulsively picking on siblings, getting into fights, inappropriate shouting, unable to take responsibility for their own actions, every problem being someone else's fault, difficulty with authority figures, fire setting , Jeckle and Hyde personality, and being abusive to pets and often times parents. In our studies 35% of TS patients had significant conduct problems compared to 2.1% of unaffected individuals. There is often an inability to appreciate the consequences of their inappropriate actions.

Q: Oppositional Defiant Disorder, what is that?
      A: Oppositional defiant disorder (ODD) is a related behavioral problem consisting of loosing temper easily, constantly arguing with adults, defying adult rules, deliberately annoying others, failing to take responsibility, blaming others, being angry, resentful, spiteful and always talking back.

Q: My son hates school, is it classified as Phobias?
      A: The presence of multiple phobias is more common in TS individuals (27%) than unaffected individuals (8%). A frequent problem is school phobia, contributed to by learning and other school problems.

Q: What is Panic Attacks?
      A: A panic attack is characterized by the sudden onset of feeling frightened or anxious, associated with a rapid heart beat, sweating, a feeling of impending death, tingling of the extremities and feeling short of breath. Such attacks were present in 33% of TS individuals compared to 8% of unaffected individuals.

Q: Depression and Mania?
      A: Wide mood swings are common in some TS individuals. Symptoms of major depression were present in 27% of TS individuals compared to 4% of controls. This is not simply a reaction to having TS since they are often punctuated by manic symptoms.

Q: Degrees of Severity of TS?
      A: Among individuals carrying the TS genes, symptoms may be absent, mild, moderate or severe. In most individuals the symptoms are so mild they do not require treatment. However, among the people that come for medical care, only about 10% are in this mild category, 50% are moderate and 30% are severe.

Q: Do I have a risk of having a TS child?
      A: TS is a hereditary disorder. On average the risk of an individual with TS having a child with TS is about 1 in 4. This risk increases if both parents have TS or a relative with TS.

Q: Treatment of the ADHD?
      A: After the tics are controlled with one of more of the above medications, Ritalin (methylphenidate), dexedrine, or a related medication may be required to treat symptoms of ADHD. This is often quite effective in helping to control the ADHD and may improve school performance. In some individuals, the Ritalin may result in a mild to significant increase in the tics. If this cannot be controlled by a moderate increase in tic medication, the ADHD medication may have to be stopped or replaced by a different medication. However, contrary to statements in the Physican's Desk Reference, Ritalin is not contraindicated in the treatment of ADHD in individuals with TS.

Q: Treatment of Obsessive-compulsive Behaviors and Depression?
      A: The selective serotonin reuptake inhibitors (SSRI's) are usually effective in treating the obsessive-compulsive behaviors, depression, irritability, and mood swings in TS-ADHD children and adults. These include Prozac, Anafronil, Zoloft, Paxil, Luvox, Celexa, Serzone and Effexor.

Q: Psychological Treatment?
      A: When TS children have significant behavioral and conduct problems, the home can be in chaos. The constant confrontations, tempter tantrums, lying, and failure to take responsibility cause anger, turmoil, frustrations and cross recriminations in the household. Parents are often told that their child's poor behavior is a result of their poor parenting skills. However, in our experience, even parents with excellent parenting skills, and other normal children in the house, may have difficulty controlling the behavior of a TS child. Often times traditional psychiatric treatments are ineffective. We find that family therapy is helpful, since the behavior of a TS child affects everyone around them and they often have a distorted perception of the role their actions play in their troubled social interactions.Structure is very important. A basic rule is that motor tics, vocal tics, coprolalia, and compulsive behaviors are not to be disciplined since these are generally involuntary actions, but other disruptive, anti-social, aggressive or destructive behaviors require a immediate, short, neutral consequence, such as time out in a room or corner or some form of physical activity.

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