Most of the Frequently Asked Questions about Tourette Syndrome can be answered by reading the following summary. If you have additional questions go to "Ask Dr. Comings.
Here you can ask your own questions or read what others have asked.
Do you know someone who has:
If so - he or she may have Tourette syndrome (TS)
- Rapid eyeblinking, facial grimacing, head jerking, crotch touching, or other muscle tics?
- Throat clearing, barking, sniffing, squeaking, or other kinds of repeated vocal noises?
- 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?
- Anxiety attacks?
- Inappropriate sexual behavior?
What is Tourette Syndrome?
Tourette syndrome is a common, genetic disorder whose primary manifestations are the presence of motor and vocal tics. There are, however, many associated features such as obsessive-compulsive behaviors, short attention span, hyperactivity, learning disabilities, dyslexia, short temper, discipline problems, stuttering, multiple phobias, anxiety attacks, depression, wide mood swings,
What is a motor tic?
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.
What is a vocal tic?
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.
How do you diagnose Tourette syndrome?
The DSM Manuals of the American Psychiatric Association list the following diagnostic criteria:
- Onset of symptoms prior to age 19.
- Presence of motor and vocal tics.
- A waxing and waning course. That is one tic may be replaced by another tic and the severity varies over time.
- The tics can be suppressed voluntarily for minutes to hours.
- The tics are present almost every day for at least one year.
Just because the tics can be suppressed for awhile does not mean the tics are voluntary or put on. Suppression requires a conscious effort which eventually fails and the tics may be worse after a period of suppression. Not uncommonly a person can suppress the tics during school time, or at the doctors office, then release them at home or in the car.
What is coprolalia?
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.
How Common is Tourette Syndrome?
TS was once thought to be a rare disease. However studies of ours in a Los Angeles school district indicate 1 in 100 school boys had TS. It is less common in girls. Subsequent studies in New York and England suggest an ever higher incidence. This makes it one of the commonest genetic disease affecting children. Because of the wide range of associated problems, TS is an important factor in many children with school and behavioral problems.
How is Tourette Syndrome Inherited?
Genetic studies suggest that individuals with significant symptoms have inherited multiple genes from
both parents, i.e. it is polygenic. The associated behaviors listed above are common in the relatives of TS individuals. See the Research Articles for many of the genetic studies carried out at the City of Hope Tourette
Is Tourette Syndrome a Progressive or Fatal Disorder?
No. TS not a progressive disorder. Although some symptoms are likely to be present throughout life and may temporarily worsen for varying periods of time, the symptoms often
decrease with age. This usually begins in the teen years or later.
Attention Deficit Hyperactivity Disorder
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.
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.
Echolalia and Palilalia
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.
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
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. In the studies at the City of Hope, 27% of TS patients had dyslexia compared to 4.2% of unaffected children.
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.
Problems with Math and Writing
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.
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.
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.
Oppositional Defiant Disorder
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
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.
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
Depression and Mania
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
Degrees of Severity of TS
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.
Risk of Having a TS Child
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
Treatment of TS
Our experience with 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. If you have an appointment with Dr. Comings he can discuss these with you, if necessary.
Treatment of the ADHD
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.
Treatment of Obsessive-compulsive Behaviors and Depression
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.
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.
Books on Tourette Syndrome
See Hope Press Books