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).
Coprolalia is actually rather rare in GTS cases - somewhere between 1 and 10 people out of 50 GTS cases, over a lifetime. The long-held belief that coprolalia is required for GTS persists in some parts of the medical establishment even today and has led to many misdiagnoses.
[Note added in 2010: Physicians know a lot more about neurological issues today than then did in 1995 when I wrote that comment. While I was told in 1981 by a prominent neurologist (who was well-published and highly respected in the field) that I did not have TS because I did not have coprolalia, he would probably be very embarrassed today if I reminded him of that diagnosis.]
Nothing! There is nothing that you did wrong, either during pregnancy or as a parent, that had anything to with your child developing GTS.
GTS occurs in all populations and all ethnicities around the world. In the 1960's and 1970's some early
studies were published which indicated a prevalence in Eastern Europeans, especially Ashkenazi Jews. This is a
classic example of ascertainment bias: the studies were performed in clinics which served large local Jewish
populations.
A metastudy (a review and statistical summary of published studies) performed in 2008 (see Mary M. Robertson. "The prevalence and epidemiology of Gilles de la Tourette Syndrome. Part 1: The epidemiological and prevalence studies." J. Psychosomatic Research. 65(2008):461-472.) found 3989 GTS diagnoses in 420,312 individuals ages 5 to 18, indicating that approximately one percent of the population has tourettes.
In DSM V, expected to be released in 2012, a large number of diagnoses will be changed to reflect medical knowledge that has been gained in the past two decades. The final format of DSM V has not been released. Tourette's may be among them. The following reflects DSM-IV:
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.)[This is no longer a diagnostic requirement - it was removed in DSM-IV-TR (2000)]
Onset before age 18.
Not drug-induced or due to another medical condition.
The short answer is yes, but the collection of genes responsible in most situations have not been identified. has not been identified.
The evidence indicates that susceptibility to GTS is due to a combination of genes. It could be that these genes are common. For example, a single gene might have two types, called alleles. Call them A and B. If 70 percent of the population has A, and 30 percent of the population has B, then if there were four of these genes, less than one percent would have B on all four. This would also indicate while GTS could seem to appear spontaneously in the children of parents, neither of whom have tourettes.
Click Here. for a list that I compiled a few years ago.
This was probably a good question when I wrote this in the mid 1990s. The public and most physicians are a lot more aware of GTS these days, and missed diagnoses are far less common.
Historically, these were some of the more common mis-diagnoses:
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. Behavioral therepy may help individuals learn some transferance techniqes, i.e., replace one kind of tic with another.
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.
See the answer to the next question.
Try contacting the Tourette Syndrome Association - They can connect you with physicians and support groups. If you are outside the US they can also refer you to similar organizations in other countries.
Here is a list of books I've found helpful.