Diagnostic Critera for Tourettes Syndrome and FAQ
This is long and you may want to print it.
1. Q. What is Tourette Syndrome?
A. Tourette Syndrome (TS) is a neurological disorder
characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. The symptoms include:
sometimes confusing since it is known that most people with
TS do have some control over their symptoms. What is not
recognized is that the control, which can be exercised
anywhere from seconds to hours at a time, may merely
postpone more severe outbursts of symptoms. Tics are
experienced as irresistible and (as with the urge to sneeze)
eventually must be expressed. People with TS often seek a
secluded spot to release their symptoms after delaying them
in school or at work. Typically, tics increase as a result of
tension or stress, and decrease with relaxation or
when focusing on an absorbing task.
2. Q. How would a typical case of TS be described?
A. The term typical cannot be applied to TS. The expression
of symptoms covers a spectrum from very mild to quite
severe. However, the majority of cases can be categorized
3. Q. Is obscene language (coprolalia) a typical symptom of TS?
A. Definitely not. The fact is that cursing, uttering obscenities, and ethnic slurs are manifested by fewer than 15% of people with TS. Too often, however, the media seize upon this symptom for its sensational effect.
4. Q. What causes the symptoms?
A. The cause has not been established, although current
research presents considerable evidence that the disorder
stems from the abnormal metabolism of at least one brain
chemical (neurotransmitter) called dopamine. Undoubtedly,
other neurotransmitters, e.g. serotonin, are involved as well.
5. Q. How is TS diagnosed?
A. A diagnosis is made by observing symptoms and by
evaluating the history of their onset. No blood analysis or
other type of neurological testing exists to diagnose TS.
However, some physicians may wish to order an EEG, MRI,
CAT scan, or certain blood tests to rule out other ailments that might be confused with TS. Rating scales are available for assessment of tic severity.
6. Q. What are the first symptoms?
A. The most common first symptom is a facial tic such as
rapidly blinking eyes or twitches of the mouth. However,
involuntary sounds such as throat clearing and sniffing, or tics of the limbs may be initial signs. For a minority, the disorder begins abruptly with multiple symptoms of movements and sounds.
7. Q. How are tics classified?
A. Two categories of tics and several other examples are:
Motor -- Eye blinking, head jerking, shoulder shrugging and
Vocal -- Throat clearing, yelping and other noises, sniffing and tongue clicking.
Motor -- Jumping, touching other people or things, smelling,
twirling about, and only rarely, self-injurious actions including
hitting or biting oneself.
Vocal -- Uttering words or phrases out of context and coprolalia (vocalizing socially unacceptable words).
The range of tics or tic-like symptoms that can be seen in TS is very broad. The complexity of some symptoms is often
perplexing to family members, friends, teachers and employers who may find it hard to believe that the actions or vocal utterances are involuntary.
8. Q. How is TS treated?
A. The majority of people with TS are not significantly
disabled by their tics or behavioral symptoms, and therefore
do not require medication. However, there are medications
available to help control the symptoms when they interfere
with functioning. The drugs include haloperidol (Haldol),
clonidine (Catapres), pimozide (Orap), fluphenazine (Prolixin, Permitil), and clonazepam (Klonopin). Stimulants such as Ritalin, Cylert, and Dexedrine that are prescribed for ADHD may increase tics. Their use is controversial. For obsessive compulsive traits that interfere significantly with daily functioning, fluoxetine (Prozac), clomipramine (Anafranil), sertraline (Zoloft), risperidone (Risperdal), and paroxetine (Paxil) are prescribed.
Dosages which achieve maximum control of symptoms vary for each patient and must be gauged carefully by a doctor. The medicine is administered in small doses with gradual increases to the point where there is maximum alleviation of symptoms with minimal side effects. Some of the undesirable reactions to medications are weight gain, muscular rigidity, fatigue, motor restlessness and social withdrawal, most of which can be reduced with specific medications. Side effects such as depression and cognitive impairment can be alleviated with dosage reduction or a change of medication.
Other types of therapy may also be helpful. Psychotherapy can assist a person with TS and help his/her family cope, and some behavior therapies can teach the substitution of one tic for another that is more acceptable. The use of relaxation techniques and/or biofeedback can serve to alleviate stress reactions that cause tics to increase.
9. Q. Is it important to treat Tourette Syndrome early?
A. Yes, especially in those instances when the symptoms are viewed by some people as bizarre, disruptive and frightening. Sometimes TS symptoms provoke ridicule and rejection by peers, neighbors, teachers and even casual observers. Parents may be overwhelmed by the strangeness of their child's behavior. The child may be threatened, excluded from activities and prevented from enjoying normal interpersonal relationships. These difficulties may become greater during adolescence -- an especially trying period for young people and even more so for a person coping with a neurological problem. To avoid psychological harm, early diagnosis and treatment are crucial. Moreover, in more serious cases, it is possible to control many of the symptoms with medication.
10. Q. Do all people with TS have associated behaviors in addition to tics?
A. No, but many do have one or more additional problems
which may include:
Obsessions which consist of repetitive unwanted or
Compulsions and Ritualistic Behaviors which occur when a person feels that something must be done over and over and/or in a certain way. Examples include touching an object with one hand after touching it with the other hand to "even things up" or repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it "sounds right."
Attention Deficit Disorder with or without Hyperactivity
(ADD or ADHD) occurs in many people with TS. Children may show signs of hyperactivity before TS symptoms appear. Indications of ADHD may include: difficulty with concentration; failing to finish what is started; not listening; being easily distracted; often acting before thinking; shifting constantly from one activity to another; needing a great deal of supervision; and general fidgeting. Adults too may exhibit signs of ADHD such as overly impulsive behavior and concentration difficulties and the need to move constantly. ADD without hyperactivity includes all of the above symptoms except for the high level of activity. As children with ADHD mature, the need to move is more likely to be expressed by restless, fidgety behavior. Difficulties with concentration and poor impulse control persist.
Learning Disabilities may include reading and writing
difficulties, problems with mathematics, and perceptual
Difficulties with impulse control which may result, in rare
instances, in overly aggressive behaviors or socially
inappropriate acts. Also, defiant and angry behaviors can
Sleep Disorders are fairly common among people with
TS. These include frequent awakenings or walking or talking
in one's sleep.
11. Q. Do students with TS have special educational
A. While school children with TS as a group have the same IQ range as the population at large, many have special
educational needs. Data show that many may have some kind of learning problem. That condition, combined with attention deficits and the difficulty coping with frequent tics, often call for special educational assistance. The use of tape recorders, typewriters, or computers for reading and writing problems, untimed exams (in a private room if vocal tics are a problem), and permission to leave the classroom when tics become overwhelming are often helpful. Some children need extra help such as access to tutoring in a resource room.
When difficulties in school cannot be resolved, an educational evaluation may be indicated. A resulting identification as "other health impaired" under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific educational problems in school. Such an approach can significantly reduce the learning difficulties that prevent the young person from performing at his/her potential. The child who cannot be adequately educated in a public school with special services geared to his/her individual needs may be best served by enrollment in a special school.
12. Q. Is TS inherited?
A. Genetic studies indicate that TS is inherited as a dominant gene (or genes) causing different symptoms in different family members. A person with TS has about a 50% chance of passing the gene to one of his/her children with each separate pregnancy. However, that genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive symptoms with no tics at all. It is known that a higher than normal incidence of milder tic disorders and obsessive compulsive behaviors occur in the families of TS patients.
The sex of the offspring also influences the expression of the
gene. The chance that the gene-carrying child of a person with TS will have symptoms is at least three to four times higher for a son than for a daughter. Yet only about 10% of the children who inherit the gene will have symptoms severe enough to ever require medical attention. In some cases TS may not be inherited, and cases such as these are identified as sporadic TS. The cause in these instances is unknown.
13. Q. Is there a cure?
A. Not yet.
14. Q. Is there ever a remission?
A. Many people experience marked improvement in their late teens or early twenties. Most people with TS get better, not worse, as they mature, and those diagnosed with TS have a normal life span. As many as 1/3 of patients experience remission of tic symptoms in adulthood.
15. Q. How many people in the U.S. have TS?
A. Since many people with TS have yet to be diagnosed,
there are no absolute figures. The official estimate by the
National Institutes of Health is that 100,000 Americans have
full-blown TS. Some genetic 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.
16. Q. What is the history of TS?
A. In 1825 the first case of TS was reported in medical
literature with a description of the Marquise de Dampierre, a
noblewoman whose symptoms included involuntary tics of
many parts of her body and various vocalizations including
coprolalia and echolalia. Later, Dr. Georges Gilles de la
Tourette, the French neurologist for whom the disorder is
named, first described nine cases in 1885. Samuel Johnson, the lexicographer, and Andre Malraux, the French author, are among the famous people who are thought to have had TS
From FAQ of Tourettes Syndrome Association
"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." Henry David Thoreau
Someone should sticky this.
Power corrupts, absolute power is kinda neat
Dairy Intolerance and tics
I just read this thread and feel compelled to share my experience.
When my son, was in first grade he began having tics . . . throat clearing and eye blinking. In just a few short months this behavior became constant from morning till night. He even began spitting, even spat on a friend at school.
At this point I brought him to see the Naturopathic Physician which he had seen as a baby for recurrent ear infections. The ND looked in his chart and reminded me that my son had a milk intolerance as a baby, which had caused the ear infections. Once he was taken off of all dairy the ear infections went away.
The ND asked if he was still abstaining or if he had begun to consume dairy. That's when my son piped up and said that he was drinking a carton of milk each day in the school cafeteria (unbeknowst to me).
He immediately stopped drinking milk and within a couple of days the tics completely went away.
Now he is 18 years old and he can have some dairy (pizza, ice cream, etc.) But he always knows if he's consumed too much because he'll start throat clearing.
Just our experience. But it was very real and dramatic. Please understand that when he was at his worst, the throat clearing and eye blinking was non-stop from morning till night. Not a moment went by that he wasn't doing both. I'm sure that he would have been diagnosed with Tourette's if he was seen by an MD.
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