Tourette Syndrome

DISABILITY CATEGORY: Other Health Impairment—Tourette Syndrome

TYPES: Symptoms range from mild to severe, but most cases are mild.

DEFINITION:

Our nation’s special education law, the Individuals with Disabilities Education Act (IDEA) defines Tourette Syndrome under “other health impairment,” which means…

            “…having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that–

• is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, and sickle cell anemia; and

• adversely affects a child’s educational performance.” [34 code of Federal Regulations §300.7(c)(12)]

OTHER DEFINITIONS:  A severe neurological disorder characterized by multiple facial and other body tics, usually beginning in childhood or adolescence and often accompanied by grunts and compulsive utterances, as of interjections and obscenities. Also called Gilles de la Tourette syndrome; [After Georges Gilles de la Tourette (1857–1904), French physician.]

Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The first symptoms of TS are almost always noticed in childhood.  Some of the more common tics include eye blinking and other vision irregularities, facial grimacing, shoulder shrugging, and head or shoulder jerking.  Perhaps the most dramatic and disabling tics are those that result in self-harm such as punching oneself in the face, or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others).  Many with TS experience additional neurobehavioral problems including inattention, hyperactivity and impulsivity, and obsessive-compulsive symptoms such as intrusive thoughts/worries and repetitive behaviors. (Source: NINDS)

FACTS AND STATS:  The prevalence of Tourette syndrome is estimated at 2% of the general population. This may be a conservative estimate, since many people with very mild tics may be unaware of them and never seek medical attention. Tourette syndrome is four times as likely to occur in boys as in girls. Famous people with Tourette syndrome include Mahmoud Abdul-Rauf (formerly Chris Jackson), Jim Eisenreich, and Mozart. (Source: http://health.allrefer.com/health/gilles-de-la-tourette-syndrome-info.html)

CAUSES: The genetics of TS is not well understood, and a substantial percentage of the human genome has been excluded. (The human genome is the complete set of genes in the chromosomes of human cells.) However, genetic analysis (genome scanning) of numerous pairs of siblings has shown several areas that may contain genes that, when mutated, may give rise – or increase susceptibility – to TS. There is some evidence that, in some instances, TS may be inherited from both parents (bilineal transmission), with the father typically affected by childhood tics and the mother typically having symptoms of obsessive-compulsive behavior.The basic underlying defect in TS is unknown. However, many researchers suggest that the disorder results from abnormalities in the activity of certain chemicals in the brain known as neurotransmitters, particularly dopamine within the basal ganglia. This is supported by biochemical brain analysis of patients with TS and the observation that dopamine-blocking agents (dopamine receptor antagonist) suppress tics in some patients. In addition, abnormalities in serotonin activity and other neurotransmitters are thought to play some role in causing symptoms associated with TS. (Source: We Move – Worldwide Education and Awareness for Movement Disorders)

PREVENTION: There is no known prevention.  (Source: http://health.allrefer.com/health/gilles-de-la-tourette-syndrome-prevention.html)

CHARACTERISTICS:

• Multiple motor and one or more vocal tics at some time during the illness, although not necessarily simultaneously

• The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year

• Periodic changes in the number, frequency, type, location, and severity of the tics; for example, symptoms may disappear for weeks or months at a time

• Onset before the age of 18.

Associated Behaviors—additional problems may include:

• Obsessions, which consist of repetitive unwanted or bothersome thoughts

• Compulsions and ritualistic behaviors. Examples include touching an object with one hand after touching it with the other hand to "even things up," repeatedly checking to see that the flame on the stove is turned off, or repeating a sentence many times until it "sounds right."

• Attention Deficit Disorder (ADD) with or without Hyperactivity (or ADHD).

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. ADD without hyperactivity includes all of the above symptoms except for the high level of activity.

• Learning disabilities, including reading and writing difficulties, arithmetic disorders, and perceptual problems

• Difficulties with impulse control, which may occasionally result in overly aggressive behaviors or socially inappropriate acts. Defiant and angry behaviors can also occur. (Source: Council for Exceptional Children)

MEDICAL TREATMENT: The goal of therapy in patients with TS is to reduce motor and vocal tics and alleviate associated behavioral problems, such as obsessive-compulsive behaviors, ADHD, and impulsivity. Many patients do not have significant functional impairment because their symptoms are mild and therefore do not require medication. However, for those with symptoms that are functionally disabling and affect academic, occupational, or social performance, there are a number of medications that may alleviate particular symptoms. Drug therapy may include low doses of certain antipsychotic (dopamine receptor antagonist) medications (neuroleptics), such as haloperidol (Haldol®), pimozide (Orap®), fluphenazine (Prolixin®),and risperidone (Risperdal®), which have been found to be effective in reducing the frequency and intensity of tics. These medications should be prescribed with caution since their use may be associated with certain severe side effects. Adverse effects associated with neuroleptic therapy include the development of tardive dyskinesia (TD), a movement disorder characterized by persistent, repetitive (stereotypic) involuntary movements usually involving the lower face and mouth. Although TD often resolves with the discontinuation of drug therapy, particularly in children, the condition is not always reversible. Therefore, those who receive long-term neuroleptic therapy should be periodically evaluated to determine whether dosage levels may be decreased or therapy may be discontinued. Neuroleptic therapy may also be associated with certain short-term side effects, such as drooling, contraction of the facial and neck muscles, slow movement (bradykinesia), restlessness (akathisia), and other symptoms. Injections of botulinum toxin (BTX) into the muscles involved in tics may markedly alleviate not only the abnormal movements but also the premonitory sensations or urges that precede the tics. The administration of the antianxiety medication clonazepam (Klonopin®) or certain antidepressant medications may be helpful in the management of some of the associated behavioral symptoms. Therapy with clonidine (Catapres®) or guanfacine (Tenex®), alpha 2-adrenergic agonists, may relieve symptoms of ADHD and impulsivity, but these drugs are generally not very effective in controlling tics. In addition, in patients with obsessive-compulsive behaviors, treatment with certain antidepressant agents known as selective serotonin reuptake inhibitors (SSRIs) may be beneficial. Such medications include fluvoxamine (Luvox®), fluoxetine (Prozac®), clomipramine (Anafranil®), and many others. On occasion, biofeedback, relaxation methods, or other behavioral techniques may be helpful in alleviating stress that potentially aggravates tics. In addition, for those with associated behavioral difficulties, individualized academic, vocational, social, or other supportive services are often beneficial. (Source: We Move – Worldwide Education and Awareness for Movement Disorders)

PROGNOSIS: It is important to note that Tourette syndrome has a wide spectrum of clinical manifestations, ranging from nearly unrecognized minor movements (such as grunts, sniffling or coughing), to persistent, involuntary movements and vocalizations. The severity and nature of the symptoms may wax and wane, and generally reach maximum intensity during adolescence. They may diminish gradually in adulthood. Although 25% of patients may be symptom-free for a few years, only 8% of patients have complete and permanent remission. (Source: http://health.allrefer.com/health/gilles-de-la-tourette-syndrome-prognosis.html)

EDUCATIONAL IMPLICATIONS:  The following are tips for dealing effectively with TS symptoms in the classroom setting:

Accommodations for Attention Problems                                                           

• Some movements and noises can be annoying or disruptive to the class. Please remember that they are occurring involuntarily, and do not react with anger or annoyance! This requires patience, but reprimanding a student with TS student is like disciplining a student with cerebral palsy for being clumsy. If the teacher is not tolerant, others in the class may feel free to ridicule the child with TS.

• If some aspect of the child's tics affect the privacy or safety of others (e.g., touching others), it is important to find ways to work around the problem, but acceptance of the child is critical even when the behaviors are unacceptable.                                              

• Provide opportunities for short breaks out of the classroom. Time in a private place to relax and release the tics can often reduce symptoms in class. Private time may also enhance the student's ability to focus on schoolwork, because energy will not be used to suppress the tics.                                                                                                               

• Allow the student to take tests in a private room, so energy will not be expended on suppressing tics during a quiet time in the classroom.                                                      

•  If tics are particularly disruptive, consider eliminating recitation in front of the class for a while. Oral reports might be tape recorded, so those skills can be judged without the added stress of standing before the class.                                                                          

• Work with other students to help them understand the tics and reduce ridicule and teasing. School counselors, psychologists, and representatives from the local Tourette Syndrome Association chapter can provide information and appropriate audio-visual materials for students and staff.

Even very bright children with TS who have no trouble grasping concepts may be unable to finish written work because of visual-motor impairments. Sometimes it appears as though the student is lazy or avoiding work, but in reality the effort to record the work on paper may be overwhelming. A number of accommodations can be made to help children with writing difficulties succeed in the classroom:

• Modify written assignments by: having the child copy down and complete every other math problem; allowing the child to present a taped report rather than a written one; allowing a parent to record work or act as "secretary" so the child can dictate his ideas to facilitate concept formation. It helps to focus on what the child has mastered rather than the quantity of written work produced.                               

• Since the student with visual-motor problems may not be able to write quickly enough to get important information on paper, assign a reliable "note-taking" buddy or "homework partner" who can use carbon paper to make copies of notes and assignments. Be sure to work this out discreetly, so the child with TS does not feel different in yet another way.                                                                                                                        

• On tests with computer scoring sheets, allow the student to write on the test booklet. This helps avoid poor grades caused by the visual confusion that can occur when using the grid answer sheet.                                                                                                           

• When possible, allow as much time as needed for taking tests.                                    

• Students with visual-motor problems may be poor spellers. Rather than penalizing for spelling errors, encourage proof-reading and using a word processor with a spell checker.

• Students with TS seem to have special problems with written math. Encourage the use of manipulatives in teaching math and the use of a calculator to perform rote calculations. Using grid paper with large boxes or turning regular lined paper sideways to form columns can also help the child maintain straight columns when calculating.

Accommodations for Language Problems:                                                                          

• Provide visual input as well as auditory whenever possible. The student could receive written directions as well as oral ones, or have a copy of a lecture outline to follow while listening to instructions. Pictures and graphs that illustrate the text are usually quite effective.                               

• Give directions one or two steps at a time. Ask the student to repeat the instructions. Then have the student complete one or two items and check with you to see that they have been done properly.                                                                                                     

• If you notice a student mumbling while working, suggest a seat where he will not disturb others. Sometimes quietly "reauditorizing" instructions or information to himself can help a student grasp and remember the assignment.                                                    

Children with TS may repeat their own words or those of someone else. This may sound like stuttering but it actually involves the utterance or words or whole phrases. Other students may exploit this problem by whispering inappropriate things so that the child with TS will involuntarily repeat them and get into trouble. Be alert to this provocation. This urge to repeat can be seen in reading and writing activities. Students may be unable to complete work because they "get stuck" rereading or rewriting words or phrases over and over. This is called "looping." The following can be helpful:

• When reading, give the child a note card with a cut out "window" that displays only one word at a time. The student slides the window along while reading so the previous word is covered and the chances of getting stuck are reduced.    

• Have the student take a break or switch to other work.                

• When writing, have the student use pencil or pen without an eraser or allow the student to complete the work orally. Brief reminders to move on may help.                

• Seat the child in front of the teacher for all instruction and directions to minimize the visual distraction of classmates.                                                                                          

• Seat the child away from windows, doors, or other sources of distraction, i.e., where reading groups meet.                                                                                                            

• Give the student an "office," a quiet workplace. This could be in a corner, the hall, or the library. This place should not be used as a punishment, but rather a place the student can choose to go to when focusing becomes more difficult.                                              

• Have the student work in short intense periods with breaks to run an errand or simply wiggle in the seat.                                                                                                               

• Change tasks frequently. For example, complete five math problems, then do some spelling, etc.                                                                                                                         

• Contract for work to be done in advance. For example, finish a specific number of problems by a certain reasonable time. Short assignments with frequent checks are more effective than two or three sheets of independent work at one time.                                  

• With younger children, simple gestures, such as a hand on the student's shoulder, can be a helpful reminder to focus during listening periods. (Source: Council for Exceptional Children).

ORGANIZATIONS:

Joshua Child and Family Development Center
7611 State Line Road, Suite 142
Kansas City, MO 64114
Phone: (816) 763-7605
Fax: (816) 763-1802

The Joshua Child and Family Development Center is a non-profit organization that supports programs designed to improve the lives of individuals and families living with Tourette Syndrome, Asperger Syndrome, Obsessive Compulsive Disorder and their Associated Disorders through research, education, social and clinical programs.

Tourette Syndrome Association, Inc.
42-40 Bell Boulevard
Bayside NY 11361-2820
718-224-2999 or 888-486-8738
http://www.tsa-usa.org

Founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership organization in this field. Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome. We offer resources and referrals to help people and their families cope with the problems that occur with TS. We raise public awareness and counter media stereotypes about TS. Our membership includes individuals, families, relatives, and medical and allied professionals working in the field Today, TSA has grown into a major national health-related organization with 35 U. S. Chapters, 300 support groups, and International Contacts around the world. 

WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th Street
New York NY 10024
Phone: 212-875-8312
http://www.wemove.org

WE MOVE is the Internet's most comprehensive resource for movement disorder information and education and the only organization of its kind. Since 1991, this 501(c) 3 not-for-profit organization has been educating and informing patients, professionals, and the public about the latest clinical advances, management, and treatment options for neurologic movement disorders. At WE MOVE, we believe that increasing knowledge and understanding promote timely, accurate diagnosis, and up-to-date treatment, resulting in a better quality of life for individuals affected by these often devastating conditions.

RESOURCES:

General:

http://www.tourette-syndrome.com/  

Tourette-Syndrome.com provides an interactive "meeting place" for anyone interested in Tourette Syndrome or people wanting to help others who have TS.  Our online community services include free e-mail, message boards, chat rooms, pen-pal listings, and life story publications.  We welcome any input you have to making this site a better information source for Tourette Syndrome.

http://members.tripod.com/~tourette13/

Includes just the most important facts for everyone interested in Tourettes.

For Parents, Children and Educators:

http://www.tsa-usa.org/

Website with a variety of information on Tourettes, including an online shop on interesting material.

http://www.tourettesyndrome.net/tourette.htm

Articles, materials, and resources pertaining to Tourette's Syndrome (as well as information on other disabilities), free materials for teachers to use for screening for often-overlooked problems or for parents to use to organize their concerns or as handouts to give to their children's teachers; free glossaries, guides, and materials to help parents and educators including a medication tradename-generic name chart, a glossary of clinical terms, a glossary of special education terms, a primer on the brain, a compilation of children's literature on children with disabilities, and more.

Video

HBO and the Tourette Syndrome Association present I Have Tourette's but Tourette's Doesn't Have Me

A documentary that dispels the myths of Tourette Syndrome through the experiences of young people. Extra DVD features include a variety of resources for educators, families, and children interested in learning more about Tourette Syndrome, in addition to supplementary information from experts.

_______________________________________