TOURETTE'S SYNDROME

Gilles de la Tourette's disease, commonly known as Tourette 's
syndrome, is a rare neurological disorder characterized by
involuntary utterances and body movements, tics, and in some cases
coprolalia, the utterance of vulgarities. The disease is usually
manifested during early childhood and often worsens through
adolescence. Tourette's obvious and attention-causing symptoms add
to the emotional stress of its victims, which can exacerbate their
condition. Males are afflicted 3 to 4 times more often than
females, although familial patterns are more prevalent in female
patients. The cause of Tourette's is not known, and there is no
known cure. Symptomatic treatment has been successful in a large
percentage of cases, however, with carefully controlled dosages of
butyprophenones (major tranquilizers), particularly haloperidol.
The disease is named for the French physician Gilles de la
Tourette who, in 1885, first described the syndrome.

These multiple tics usually begin when an individual is between
the ages of 2 and 16. Males are afflicted about three or four
times more often than females.

CRITERIA FOR TOURETTE'S SYNDROME INCLUDES THE FOLLOWING:

1. Both multiple motor, and one or more vocal tics. These
both must be present, but not necessarily concurently.
(*note: a tic is a sudden, rapid, recurrent, nonrhythmic,
stereotyped motor movement, or vocalization)

2. The tics occur many times each day (usually in bouts), and
occur nearly every day, or intermittently throughout a
period of more than one year. In addition, there was
never a tic free period of more than 3 consecutive months.

3. The disturbance causes marked distress or significant
impairment in social, occupational, or other important
areas of functioning.

4. The onset is before age 18

5. The disturbance is NOT due to the direct physiological effects
of substance (e.g. stimulants) or a general medical condition
(such as post-viral encephalitis, or Huntinton's disease, etc.).

SYMPTOMS:

The first symptoms of Tourette syndrome are usually facial tics.
The individual may:

1. Blink his or her eyes excessively
2. Twitch his or her nose
3. Grimace

AS THE CONDITION PROGRESSES, HE OR SHE MAY REPEATEDLY:

1. Stretch his or her neck
2. Stamp his or her feet
3. Twist and bend his or her body

Individuals with Tourette syndrome eventually produce
uncontrollable sounds. He or she may continuously clear his or
her throat, cough, sniff, grunt, bark, or shout. Some individuals
involuntarily shout obscenities (coprolalia), or constantly
repeat the words of other people (echolalia).

Individuals with Tourette syndrome may touch other people
excessively, or repeat actions obsessively and unnecessarily.
Some individuals bite their lips and cheeks, bang their heads
against hard objects, and develop other self-destructive
behaviors.

CAN THE SYNDROME BE CONTROLLED?

Individuals with Tourette syndrome can sometimes control tics for
a short time, but eventually tension mounts and the tics once
again appear. Tics become worse during periods of stress. They
improve when the individual is not anxious, or is absorbed in an
activity. In most instances, tics disappear during sleep.

WHAT CAUSES TOURETTE SYNDROME?

The cause of Tourette syndrome is unknown. Current research has
focused on the possibility that a chemical abnormality is
involved which affects neurotransmitter systems used by the brain
to regulate movement and behavior.

Neurotransmitters are chemicals that carry signals from one nerve
cell to another in the brain and spinal cord and along the
nerves.

What Are The Treatment Options For Tourette Syndrome?

For some individuals, medication is an option. For others, it is
not. Some individuals have had some success with the medication
haloperidol. This drug, also known as Haldol, suppresses symptoms
for many patients, but does not cure the condition.

Haldol is given in very small doses that are increased slowly,
until the best possible balance between symptoms and side effects
is achieved.

The long-term side effects of Haldol are not yet known. Some
short-term side effects, such as muscular rigidity, drooling and
restlessness, can be reduced by drugs commonly used to treat
Parkinson's disease -- Artane or Cogentin, for example.

Other side effects such as fatigue, depression, anxiety, weight
gain, and difficulties in thinking clearly may be more
troublesome. Patients with mild Tourette syndrome symptoms may be
able to do without any medication.

Clonazepam or clonidine may also be helpful. These two
medications may offer fewer side effects than haloperidol.

All medication carries risks. Individuals considering medication
should ask their physicians about the medication's benefits, side
effects and risks, and costs.

WHAT RESEARCH IS BEING DONE?

Research on Tourette syndrome is being supported at major medical
institutions throughout the country by the National Institutes of
Health. Among the research highlights are:

1. Pharmacologic studies: New drugs are being tested that might
help patients who do not respond to Haldol or who cannot tolerate
the drug's side effects. Pimozide is one drug being used in
people who cannot tolerate or are unresponsive to haloperidol.
It's long-term safety is not known at this point.

2. Genetic studies: Families of Tourette syndrome patients have a
higher than normal incidence of tics, and some families have more
than one member suffering from the disorder. Scientists believe
that there is a familial form of Tourette syndrome.

3. Neurotransmitter studies: Abnormally low levels of brain
chemicals called neurotransmitters have been found in patients
with Parkinson's disease, and effective drug therapy to counter
the deficiency has been developed. Scientists hope this avenue of
research will prove equally fruitful in solving some of the
mysteries of Tourette syndrome.

4. Synaptogenesis: Research also focuses on the synapse--the
essential junction where neurotransmitter chemicals carry
impulses from one nerve to another. Together, neurotransmission
and synaptogenesis account for about half of the research dollars
currently being devoted directly and indirectly to Tourette's
syndrome.

WHAT IS THE PROGNOSIS FOR INDIVIDUALS WITH TOURETTE SYNDROME?

Individuals with Tourette syndrome can expect to live a normal
life span. Although the condition is generally lifelong and
chronic, Tourette syndrome is not a degenerative disorder. And,
in a handful of cases, complete remission occurs after
adolescence.

STUDENTS WITH TOURETTE SYNDROME:

Students with Tourette syndrome should be placed in educational
settings according to their individual needs. Many patients
function well in the regular classroom. Others, whose symptoms
greatly interfere with their academic or social adjustment, may
need smaller classes, special classes, or special schools.

All students with Tourette syndrome require a tolerant and
compassionate setting that encourages them to work to their full
potential and that is flexible enough to accommodate their
special needs.

This setting may need to include a private study area, exams
outside the regular classroom, or even oral exams, if the child's
symptoms interfere with his ability to write. Time limits are a
major source of stress for students with Tourette syndrome.

Psychological problems and, frequently minimal brain dysfunction
may compound educational problems for individuals with Tourette.
Medical researchers believe that more than half of Tourette
patients suffer from some degree of minimal brain dysfunction.

Children with minimal brain dysfunction have a normal range of
intelligence, but their short attention span, low frustration
tolerance, hyperactivity, poor coordination, and specific areas
of learning disability make it probable that they will need
special attention in school.

Psychological problems that may arise as a consequence of
Tourette syndrome, and symptoms of minimal brain dysfunction must
be treated on an individual basis.

SUGGESTIONS FOR TEACHERS AND PARENTS

1. Provide an optional "time-out" area where the child may
choose to go when the symptoms of Tourette's are intensified.

2. Encourage parents to contact a Tourette's support group.

3. Adjust time limitations and assignment lengths, when possible.
In order to maintain control and concentration, a greater than
average amount of energy is used by this student during the
school day. Thus, less available energy and concentration is
available for after school activities, including homework.

4. Maintain communication with the student's physician regarding
medications.

5. Be aware that students are sometimes symptom-free in the
classroom, with significant changes in behaviors at home, after
school.

6. When dealing with a child with Tourette's Syndrome, outside
resources may be helpful. School personnel and/or parents
could seek information through the local Children's Hospital or
one of the following sources: 

Pennsylvania  Tourette Syndrome Association, Inc.
132 W. Middle Street
Gettysburg, PA 17325
800-990-3300

Tourette Syndrome Association of Ohio
Milford Medical Building
81 Powhatten Drive
Milford, Ohio (513) 831-2976
800-543-2675

National Tourette's Association
41-02 Bell Blvd.
Bayside, N. Y. 11361
(212) 224-2999