Division of Occupational Therapy - OT Connect
Tourette's Syndrome
Fact Sheets
Gilles de la Tourette syndrome (TS) is a pervasive disorder affecting neurologic and behavioral function (Case-Smith, 2001). Although the basic cause of TS is unknown, current research suggests that there is an abnormality in the gene(s) affecting the brain's metabolism of neurotransmitters such as dopamine, serotonin, and norepinephrine. Neurotransmitters are chemicals in the brain that carry signals from one nerve cell to another. It is estimated that 100,000 Americans have full-blown TS, and that perhaps as many as 1 in 200 show a partial expression of the disorder (National Institute of Neurological Disorders and Stroke, 2001).
Diagnostic Criteria: (Diagnostic and Statistical Manual of Mental Disorders - Fourth Edition (DSM-IV)
- Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)
- The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.
- The disturbance causes marked distress or significant impairment in social, occupational, or other important areas of functioning.
- The onset is before age 18 years.
- The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington's disease or postviral encephalitis).
Common Symptoms/Course of Disease
Most characteristic of TS are involuntary vocal and motor tics. (Case-Smith, 2001). Vocal Tics include:
- Compulsive barking or other animal-like sounds
- Grunting
- Throat clearing
- Sniffling
- Coughing
- Echolalia (repeating words that are heard)
- Coprolalia (repeating or shouting obscene words)
Motor Tics include:
- Eye blinking
- Jerking the head
- Movement of the eyes
- Different facial expressions (grimacing and nose twitching)
- Body twisting and bending
- Foot stamping
- Self-harming behaviors (lip and cheek biting, head banging)
(National Institute of Neurological Disorders and Stroke, 2001).
Tics alternately increase and decrease in severity, and periodically change in number, frequency, type, and location. Symptoms may subside for weeks or months at a time, but later can recur. People with TS can sometimes suppress their tics for a short time, but the effort is similar to that of holding back a sneeze. Eventually tension mounts to the point where the tic escapes. Tics worsen in stressful situations; however they improve when the person is relaxed or absorbed in an activity. In most cases tics subside during sleep (National Institute of Neurological Disorders and Stroke, 2001).
Diagnoses associated with TS: Not all people with TS have disorders other than tics. However, many people experience additional problems such as obsessive compulsive behavior, characterized by an intense need to act repeatedly, such as hand washing or checking that a door is locked; attention deficit-hyperactivity disorder, characterized by difficulty concentrating and staying on task; learning disabilities, which include reading, writing, and arithmetic difficulties; or sleep disorders, which include frequent awakenings or talking in one's sleep (National Institute of Neurological Disorders and Stroke, 2001).
Age of Onset: Symptoms of TS generally appear before the individual is 18 years old (National Institute of Neurological Disorders and Stroke, 2001). Symptoms of the condition usually appear in middle childhood, worsen for about 10 years, then lessen somewhat. The symptoms usually continue through the individual’s lifetime, with some periods of remission (Case-Smith, 2001).
Sex Bias: TS occurs more frequently in boys than girls (Case-Smith, 2001). Males are affected 3 to 4 times more often than females (Tourette Syndrome Association, Inc., 2004).
Cultural Bias: TS can affect people of all ethnic groups (National Institute of Neurological Disorders and Stroke, 2001).
Current Medical Treatment: There is no cure for TS. Most people with TS do not require medication, but medication is available to help when symptoms interfere with functioning. TS medications are only able to help reduce specific symptoms.
Some patients who require medication to reduce the frequency and intensity of the tic symptoms may be treated with neuroleptic drugs such as haloperidol and pimozide. These medications are usually given in very small doses that are increased slowly until the best possible balance between symptoms and side effects is achieved.
Recently scientists have discovered that long-term use of neuroleptic drugs may cause an involuntary movement disorder called tardive dyskinesia. However, this condition usually disappears when medication is discontinued. Short-term side effects of haloperidol and pimozide include muscular rigidity, drooling, tremor, lack of facial expression, slow movement, and restlessness. These side effects can be reduced by drugs commonly used to treat Parkinson's disease. Other side effects such as fatigue, depression, anxiety, weight gain, and difficulties in thinking clearly may be more troublesome.
Clonidine, an antihypertensive drug, is also used in the treatment of tics. Studies show that it is more effective in reducing motor tics than reducing vocal tics. Fatigue, dry mouth, irritability, dizziness, headache, and insomnia are common side effects associated with clonidine use. Fluphenazine and clonazepam may also be prescribed to help control tic symptoms.
Medications are also available to treat some of the associated behavioral disorders. Stimulants such as methyphenidate, pemoline, and dextroamphetamine, usually prescribed for attention deficit-hyperactivity disorders, although somewhat effective, have also been reported to increase tics; therefore their use is controversial. For obsessive compulsive behaviors that significantly disrupt daily functioning, fluoxetine, clomipramine, sertraline, and paroxetine may be prescribed.
Other types of therapy may also be helpful. Although psychological problems do not cause TS, psychotherapy may help the person better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur. Psychotherapy does not help suppress the patient's tics.
Relaxation techniques and biofeedback may be useful in alleviating stress which can lead to an increase in tic symptoms.
(National Institute of Neurological Disorders and Stroke, 2001)
Occupational Therapy Involvement
The occupational therapist (OT) must fully examine a child’s specific developmental skills, and how their performance is influenced by the physical and social demands of the home, school, and community environments. After identifying the functional activities most important to the child and the child’s caregivers, the OT evaluates the components of the child’s development that are necessary for the child’s participation in everyday childhood occupations. Priorities of the family and child are a necessary part in the intervention planning process. When deciding how therapy services will be provided, it is important to consider other services the child is receiving, medical and educational concerns, and financial, transportation, and scheduling constraints. In order for a treatment program to be successful, the child’s strengths and needs in the context of the environmental demands, child and family priorities, and funding considerations must be considered.
Specific areas of intervention for the child with TS are:
- Social skills
- Stress-reduction programs
- Handwriting
- Attention
- Perceptual skills
- Sensory dysfunction
- Fine motor skills
(Case-Smith, 2001)
It is important that the student with TS is able to function in the classroom. The OT can educate the child’s teacher on classroom adaptations for the child with TS:
For tic symptoms
- Tests taken in separate location with time limits waived or extended
- Educate the other children on TS
- Provide a refuge where the student may go to calm down or to release tics or obsessions
- Give the child frequent breaks out of the classroom to release tics in a less embarrassing environment
For fine/motor visual impairment
- Tests given orally
- Use of a word processor
- Shorten assignments
- Do not penalize child for spelling errors or poor handwriting
- Provide class notes rather than having the student copy from the chalkboard
For obsessive compulsive symptoms
- Assess the nature of the obsessions, then brainstorm possible solutions
- If the child is obsessed with germs, allow them to carry hand sanitizer in their pocket
- If the child is obsessed with having a perfectly sharpened pencil, allow them to use a mechanical pencil
For short fuse difficulties
- Help the child learn to remove him/herself from the room before a situation escalates out of control
- Allow the child to leave 2-3 minutes early from class to avoid crowded hallways
- Place the child in a classroom with a structured, but flexible teacher
For ADHD symptoms
- Appropriate seating for the student: in the front of the classroom on the side where the teacher can assist the student when needed
- Allow freedom of movement
- Break down assignments by giving the child one paper at a time rather than several
- Provide a quiet place for working in the classroom
- Provide a structured, yet flexible classroom
- Allow the child to leave their last class a few minutes early to pack up and organize materials
- Do not penalize students who forget or lose basic classroom supplies; keep a supply of paper, pens, pencils to lend
(Tourette Syndrome Association, Inc., 2004)
References
How OT Makes a Difference: Evidence-Based Practice
School based occupational therapy services for children with Tourette’s Syndrome
Occupational therapists see many children with Tourette’s syndrome for school-based problems. Occupational therapists use different assessments on children with TS including the Bender-Gestalt VMI, Beery-Buktenica, Bruininks-Oseretsky, Purdue Pegboard, and handwriting speed tests. There are five areas that OTs may address when working with children with TS. The first is improving fine motor skills. They may have difficulty manipulating objects, tying shoelaces, eating, and dressing. The second area OTs address is dysgraphia (poor handwriting). These children have difficulty with the formation of letters, the size of the letters, and the lack of fluidity to the writing. The third area addressed is using the workspace appropriate with handwriting. They may have difficulty staying in the margins and not using appropriate spacing. The fourth area addressed is increasing the speed of handwriting. Arm tics, compulsive behaviors, visual processing deficits, or the side effects of medications may interfere with handwriting. The fifth area addressed is improving visuomotor integration. These children may have difficulty with written math work or writing within the lines.
Packer, L., & Gentile, M. (1994). School based occupational therapy services for children with Tourette Syndrome. Advance for Occupational Therapists, 10, 16.
Classroom seating for children with attention deficit hyperactivity disorder: therapy balls versus chairs.
The purpose of the study was to investigate the effects of therapy balls when used as seating on in-seat behavior and legible word productivity of students with attention deficit hyperactivity disorder (ADHD). Children from a 4th grade inclusive classroom were observed during a daily language arts session. The children spent time seated in chairs, as well as sitting on therapy balls. The results demonstrated that when seated on therapy balls, there was an increase in in-seat behavior and legible word productivity for students with ADHD.
Schilling, D., Washington, K., Billingsley F., & Deitz, J. (2003). Classroom seating for children with attention deficit hyperactivity disorder: therapy ball versus chairs. American Journal of Occupational Therapy, 57, 534-41.
The use of a weighted vest to increase on-task behavior in children with attention difficulties.
Children with attention deficit hyperactivity disorder (ADHD) often show an inability to sustain visual attention during classroom fine motor activities. This study investigated the effect of wearing a weighted vest (deep-pressure sensory input) on children's on-task behavior in the classroom. Four students with documented attention difficulties and hyperactivity were timed with a stopwatch to measure their on-task behavior during fine motor activities in the classroom. All 4 students were timed for six 15-min observations without wearing a weighted vest and for six 15-min observations while wearing a weighted vest. On-task behavior increased in all 4 students while wearing the weighted vest. Additionally, 3 of the 4 students frequently asked to wear the vest other than during the observation times. These preliminary findings support the hypothesis that wearing a weighted vest to apply deep pressure increases on-task behavior during fine motor activities.
VandenBerg, N. (2001). The use of a weighted vest to increase on-task behavior in children with attention difficulties. American Journal of Occupational Therapy, 55, 621-8.
Anecdotal Reports
Mike is a 10 year old boy diagnosed with Tourette syndrome (TS), obsessive-compulsive disorder (OCD), sensory integration dysfunction (SID), attention deficit hyperactivity disorder (ADHD), and anxiety disorder. Just 5 months ago, he was diagnosed with TS; however, he has been receiving outpatient Occupational Therapy (OT) services since he was 7 years old for OCD, SID, and ADHD. Before being diagnosed with TS, it was unknown if his tics were obsessive behaviors, or actually tics. Mike has several vocal tics, including barnyard noises. Fortunately, Mike does not experience coprolalia (shouting obscene words), but he is overly anxious of the possibility of this occurring. He also has several motor tics, including facial, head, and body movements. This is Mike’s first year in the public school setting. He had attended a private Christian school previously where the students and teachers were like a family and excepted Mike for who he was. Mike has a hard time dealing with change. With his family preparing to move next year, Mike was placed in a public school to slowly expose him to changes. They are hoping that by moving him to a new school this year, he will be able to adjust easily to another new school after they move. He is also involved in the academically gifted program, which takes place on full school day a week.
Mike is still receiving outpatient OT services. His family opted for him to not receive OT in the school system. They didn’t want him to be removed from the classroom more than is needed, and they didn’t want him to be labeled as being different. The OT introduced the Wilbarger Protocol to Mike and his family. This involves brushing the child and providing joint compressions every 2 hours. Mike and his family were compliant, and performed this procedure over the summer. Mike responded well to this treatment, with a noted decrease in sensory defensiveness. The OT also addressed fine motor skills and hand tasks. Mike had problems with his handgrip, due to sensory issues and muscle tightness in the hand. The OT helped Mike with hand extension, having him write on windows and other vertical surfaces. Mike still fatigues easily, however writing has gotten drastically easier for him. The OT also spoke to Mike’s teacher about his problems with handwriting. He is now only required to write 75% of the writing expected in the classroom. Mike also has been educated on TS, and has learned to recognize the emergence of tics, helping him to better control them. Mike’s teacher has been very cooperative with the OT recommendations. His teacher sends him on make-believe errands that involves going up and down stairs, while he wears a weighted backpack with sand. This “wears his body out,” and relaxes him before exams. Mike’s mother said that OT has helped Mike in so many ways, and she is so grateful for everything the OT has done for him.
Client Handout
Web Links
- Tourette Syndrome Association, Inc.
http://tsa-usa.org/
This website provides information on TS, as well as articles and other resources for parents and educational professionals. There is an option to sign up for a newsletter for children and for adults provided by the Tourette Syndrome Assocation.
- Tourette Syndrome Plus
http://www.tourettesyndrome.net/
This website provides valuable information on TS, and provides many handouts for the family and teachers. There is an advocacy section where documents and other resources are provided pertaining to the educational rights of students with their disabilites.
- Healthcyclopedia
http://www.healthcyclopedia.com/neurological-disorders/tourette-syndrome.html
This website provides information on the diagnosis and treatment of TS. It also contains a large list of links for different websites about TS.
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