Frequently Asked Questions About Tourette Syndrome

Some commonly asked questions about Tourette Syndrome

What is Giles de la Tourette Syndrome? (GTS)

How can I have GTS if I don't have coprolalia?

My child has GTS. What did I do wrong?

I'm not Jewish. How can my child have GTS?

How common is GTS?

Are there any Famous people with GTS?

What is a tic? What are the different kinds of tics?

Is GTS Psychological?

What are the Standard Diagnostic Criteria?

Is GTS Genetic?

How can I find out about medications that are used for GTS?

Why is GTS so frequently misdiagnosed?

Are there alternative treatments to medications?

How can I find a physician who knows something about GTS?

How can I get in touch with other people who are parents of children with GTS or have GTS themselves?

Can you recommend a good book on TS?

I've read all the books. Where can I find the latest technical information?

What is Giles de la Tourette Syndrome? (GTS)

Tourette Syndrome is an inherited, neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. In a minority of cases, the vocalizations can include socially inappropriate words and phrases -- called coprolalia. These outbursts are neither intentional nor purposeful. Involuntary symptoms can included eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging or jumping.
These and other symptoms typically appear before the age of 18 and the condition occurs in all ethnic groups with males affected 3 to 4 times more often than females. Although the symptoms of TS vary from person to person and range from very mild to severe, the majority of cases fall into the mild category. Associated conditions can include obsessivity, attentional problems and impulsiveness.
Most people with TS lead productive lives and participate in all professions. Increased public understanding and tolerance of TS symptoms are of paramount importance to people with Tourette Syndrome.
An extremely thorough, up-to-date review is by Mary M. Robertson and Jeremy S. Stern, "The Gilles de la Tourette Syndrome," Critical Reviews in Neurobiology, 11(1):1-19 (1997).

Study	Frequency	? Type of Sample
Brunn, J. Am. Acad. Ch. Psychiat., 23:126 (1984)	5/10,000	Typically accepted figure
Burd, et. al., Am. J. Psychiat. 143:787 (1986)	0.77/10,000 (boys) 0.22/10,00 (girls)	North Dakota School Districts
Comings, et. al., J. Clin. Psychiat, 51:463 (1990)	105/10,000 (boys) 13/10,000 (girls)	Duarte, California
Apter, et. al., Adv. in Neurology, 58:67(1992)	4.9/10,000 (boys) 3.1/10,000 (girls)	Israeli population based
Caine, et. al., Neurology,38:472 (1988)	2.87/10,000	Monroe County, New York, Public Schools

Are there any Famous people with GTS?

Samuel Johnson: (1709-1784) inventor of the english dictionary.

Nikolai Levin in Anna Karenina (famous fictional person) modeled after Leo Tolstoy's brother Dmitry Tolstoy.

Wolfgang Mozart: (1756-1791) may have had GTS.

Jim Eisenreich: major league baseball player (Florida Marlins; previously with the Royals and the Phillies).

Mahmoud Abdul-Rauf (formerly Chris Jackson) of the NBA (Denver Nuggets, LSU).

Carl Bennett, M.D.: a surgeon with GTS.

Peter Antico: actor

Kurt Tidmore: novelist

Julius Wechter: late musician, created Baja Marimba band after being a member of the Tijuana Brass.

Kurt Cobain (1968-1994): Lead singer of Nirvana. He did not have GTS, as far as I know, although he did write the song Tourettes published on the In Utero album. He is quoted as saying: "There's a big threat of me turning into this crazy street person. Some eighty-year-old guy with Tourettes Syndrome, cursing his head off, telling the whole world they're fucked" in Come as You Are: The Story of Nirvana. [Thank you to Jon Richards for pointing out this reference.] So either he was badly misinformed, or had a fear of developing TS, or actually had TS (of which there is no evidence).

What is a tic? What are the different kinds of tics?

A tic is usually defined as sudden and uncontrollable body movement (motor tic ) or utterance ( vocal tic ). However, not all tics are sudden; some are slow, with an almost dance-like, seemingly choreographed, motion (e.g., choreic tics). In Tourettes, most tics are more sudden. A tonic tic is marked by prolonged muscular contraction; a clonic tic is marked by a series of repeated contractions and relaxations.

Touretic tics may be simple tics which consist of a single movement - an eye blink, a head shrug (e.g., the "hair out of the eyes tic" which is extremely common in GTS), a knee jerk, a snuffling or sniffing sound, throat clearring, snorting, coughing. While they are involuntary 1/3 to 2/3 of touretters experience premonitory urges: they are aware that the tic is coming but can do nothing about it, and can delay it, but for only a short time. These can be compared to a sneeze or the urge to go to the bathroom. A complex tic is a series of simple tics or movements which are repeated as a set, or a seemingly purposeful motion, like hitting, pinching, poking, smelling, saying recognizable words or phrases.

The complex vocal tics are the most well known facet of tourettes. But only a small percentage of touretters - probably fewer than 25% - every experience them. The most commong occurances include suddenly saying or repeating words or phrases completely out of context. They need not be unusual or unacceptable. Echolalia is the repeating of words or phrases, such as "jingles" in a commerical, can occur anywhere from seconds to months to years later. (Consider the character in the movie Forget Paris who keeps repeating the Toyota jingle and reading street signs as they pass). Palilalia is the repeating of ones own words and phrases. Corprolalia is the uttering of socially inappropriate words or phrases.

Tics can be anywhere from very mild to very severe in GTS. They tend to wax and wane during the course of a touretter's life. They may encompass whole body - almost convulsive movements at times - and then seemining disappear for days, weeks, or months. It is not uncommon for tics to increase in severence during the teenage years and then almost disappear in the early twenties after the throes of puberty have been passed. However, the tics rarely disappear completely permanantly.

For a clincial diagnosis of GTS, one must have both motor and vocal tics nearly daily for year before reaching age 21. If only motor or only vocal tics are present, or they are not present for a full year, or they occur first after age 21, the diagnosis is more likely to be chronic motor (vocal) tic syndrome (CMTS, CVTS). It is generally believed that CMTS and CVTS are just milder forms of a more general form of tourettes. The treatment is identical.

Is GTS Psychological?

NO. There is and has never been any published studies demonstrating any psychological origin to GTS. There is considerable evidence for a physiological origin, however.

What are the Standard Diagnostic Criteria?

These are the criteria which your physician will use to "officially" diagnose GTS. They are listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) published by the American Psychiatric Association. However, many physicians apply a broader definition, believing that the DSM-IV criteria are merely part of a larger "Spectrum-Disorder" which includes chronic motor tic disorder, chronic vocal tic disorder, OCD and ADHD.

Both motor and vocal tics present at some time of your life, not necessarily at the same time.
Tics are frequent, usually in "bouts" and occur nearly daily for some period or ittermittently for a year and no more than three months without a tic.
Tics cause distress or interferes with social life or job function or school or something else which you or your family considers important.
Onset before age 18.
Not drug-induced or due to another medical condition.

Is GTS Genetic?

The short answer is yes, but the gene has not been identified.

The long answer is that yes, but it is more complicated than simple genetics. The primary mode of inheritence is autosomal dominant with reduced penetrance. This means (a) it is not on a sex-chromosome; (b) you only need to get the gene from one parent to get GTS; (c) getting the gene is not enough - there is less than 100% change of actually showing any GTS symptoms. Furthermore, penetrance is higher if you get the gene from both parents. In addition, the GTS gene is multifactorial - there are multiple genes involved, and it is the accumulation of a sufficient number of these genes which makes one susceptible to GTS.

Finally, in some people, environmental factors can turn the gene on. There is evidence that some viral infections (particularly streptococcus A) can do this. Furthermore, some GTS patients test positive for antibodies to certain proteins in their basal-ganglia. In other words, GTS may have resulted from nonspecific lesioning of the brain due to their having developed antibodies to their own brain proteins, just as MS (multiple sclerosis) patients do. This may have happened because they have an overactive immune system and some of these brain proteins have subsequences similar to the antigens presented by certain viral infections.

How can I find out about medications that are used for GTS?

Click Here.

Why is GTS so frequently misdiagnosed?

General Answer: Many (most) physicians still incorrectly believe that (a) GTS is rare and (b) coprolalia is required for diagnosis. Both of these beliefs are false.

Some of the common misdiagnoses are listed below (I eventually hope to say a word or two about each of these or at least put in links to pertinant sites).

Acanthocytosis
Amphetamine Usage
Aspergers Syndrome
Athetoid Cerebral Palsy
Bad Parenting
Chorea: see Syndenham's Chorea, Huntington's Disorder
Demonic Posession
Dystonia
Encephalitis lethargica
Epilepsy
Hallervorden-Spatz Disease
Huntington's Disorder
Hyperparathryodism
Jacob-Creutzfeld Disease
Jumping Frenchmen of Maine
Klazomania
Lack of Exercise
Latah
Manganese Poisoning
Meig Syndrom
Myoclonus
Myriatchit
Neonatal Karnicterus
Pelizaeus-Merzbacher Disease
Phenylketonuria
Psychosis
Schizophrenia
Spasmodic Torticollis
Status Dysmyelinatus
Syndenham's Chorea
Wilson's Disease

Are there alternative treatments to medications?

Psychotherapy: there is not a single published scientific study demonstrating any benefits of psychotherapy in the treatment of GTS tics or GTS associated OCD or ADHD symptoms. This is because GTS is a neurochemical disorder and does not have a psychological causes.
However, psychotherapy can be extremely beneficial in helping both patients and family members deal with their reactions and their peers' reactions to the symptoms, especially if there is denial in some family members, or the patient is not diagnosed until late in life and has many misdiagnoses.
Behavioral Therapy there are conflicting claims of success for behavioral therapy, but for most people it does not work. Usually, all it will do is teach the GTSer to transfer one type of tic to another. I have not been able to find a single study in the literature which examines the efficacy of behavioral therapy in a statistically significant sample. There are anecdotal cases of success in alleviating particular tics which have been published; the author's of these studies, however, rarely, if ever, address the question of transference, or fail to notice it.
Holistic approaches in a few rare cases, some people claim miracles. I haven't found any conclusive documentation.
Diet again, some people claim miracles, but this is only in rare cases. All I can say is try it and see. There is no conclusive documentation, and no consistency in the types of food which may exacerbate tics in these people.
Stopping other Medications - a number of medications have been found to exacerbate tics in a small number of people. Again, the documentation is inconclusive. But some people have found problems with various prescription and over-the-cournter cold remedies (e.g., pseudephedrine), diet drugs (amphetamines), anti-asthmatics (theophyline), and stimulants (caffeine).Always discuss any changes in medications with your physician before changing your personal treatment.

How can I find a physician who knows something about GTS?

See the answer to the next question.

How can I get in touch with other people who are parents of children with GTS or have GTS themselves?

There are two national organizations that can help you find either a support group or a physician:

Tourette syndrome association (More east coast US)
The Tourette Spectrum Disorder Association (More west coast US).

Internationally, there are TS organizations in many other countries; the TSA and TSDA both maintain extensive lists of links.

There is also a chat list for Tourette Syndrome maintained by Masachusetts General Hospital.

There are local chapters and support groups throughout the US.

Can you recommend a good book on TS?

Click here to find a list of books that I think you might find interesting here.

I've read all the books. Where can I find the latest technical information?

Try looking in medline. This is a service run by NIH which indices and abstracts ALL medical journals and has on-line abstracts back to 1966 and is freely accessible on the world-wide web. It no longer cost anything to subscribe. Any medical library will have it. Click here to find more information. Some libraries provide photocopy and delivery services as well (for a fee, of course).

Biomednet.com provides an interpreted version of medline for free to its members; anyone can join for free and will photocopy and mail you articles for a fee.