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Imagine what it must be like having a disorder where you suddenly start barking or spitting for no reason, you repeat phrases such a ‘shut up” over and over again, your lip twitches, your head jerks, your mimic another person’s words, you grunt, you groan over and over again. Welcome to the life of a child or teenager with Tourette’s syndrome/disorder.
Tourette’s is a neurological condition that affects approximately 200,000 adults in the USA. It usually emerges in childhood and is characterized by involuntary and repetitive motor and vocal tics. It is estimated that three per 1000 kids age 6 to 17 years old are diagnosed with Tourette’s. In the USA, that accounts for about 148,000 children and teenagers.
Life for a child/teenager with TS can be very frustrating, stressful and embarrassing and kids with TS are often subjected to teasing, mimicry and bullying. What is important to note, is that with TS, the child/teenager is not acting out or seeking attention. The motor and vocal tics are unplanned, uncontrollable and very difficult to suppress and can become worse when a child/teen is under stress e.g. exam or excited about something e.g. sports activity. The good news is that the majority of kids outgrown TS by time they enter into young adulthood.
Causes of Tourette’s Disorder
It was generally thought that TS is genetic. However, research indicates that a variety of genetic and environmental factors likely play a role in the development of TS. These factors include:
- Mutations involving various genes e.g. SLITRK1 This gene is involved in making a protein that plays a role in development of nerve cells and the growth of axons and dendrites that allow each cell to communicate with nearby cells
- Studies indicate that TS is inherited as a dominant gene, with 50 percent chance of passing from parent to child
- TS can be triggered by abnormal metabolism of the chemical in the brain called dopamine
- Some studies have identified that in utero factors may also contribute to increased likelihood of developing TS e.g. pregnancy complications, smoking during pregnancy, premature baby
Signs and Symptoms of TS
Vocal Tics
Vocal tics comprise simple phonic tics and complex phonic tics.
Simple Phonic Tics:
- Throat clearing
- Coughing
- Barking
- Spitting
- Grunting
- Sudden, meaningless sounds/noises
Complex Phonic Tics:
- Sudden, more meaningful utterances
- Speech atypicality – change in tone, accent, intensity of speech
- Repetitive syllables, words or phrases e.g. ‘shut up’ ‘stop that’
- Coprolalia – uttering socially unacceptable or obscene phrases
- Echo phenomenon – immediate repetition of one’s words or another person’s words
Motor Tics
Motor tics are involuntary, recurrent, nonrhythmic movements of various parts of the body. The most common motor tics are:
- Eye blinking
- Lip twitching
- Eye darting
- Swallowing
- Shoulder shrugging
- Nose twitching
- Head jerking
Other Problems associated with TS include:
- Sleep problems
- Anxiety
- Sensory processing issues
- Handwriting difficulties
- Social communication deficits
- Executive functioning deficits
- Transition issues
- Disinhibition
- Rage
- Impulsivity
Diagnosis
There no specific test that can be used to confirm as diagnosis of TS. Therefore, the clinical diagnosis of TS is based on a combination of factors including:
- Detailed family and medical history
- Physical and neurological examination
- Age when tics began
- Presence of recurrent, multiple motor and vocal tics
- Severity of tics and change in the number, frequency, type, location
- Tics and other symptoms must have been present for one year or longer
- Tics are differentiated from other types of involuntary movements such as myoclonus, dystonia, chorea
Facts
- Males are affected three to four times more than females
- The syndrome is often more severe in boys than girls
- 9 percent of teenagers grow out of TS
- 6 percent children/teenagers will have TS for life
- 8 percent diagnosed for life with chronic tic disorder
- 7 percent diagnosed for life will also have OCD
- Coprolalia occurs in less than 15 percent of children and teenagers
Co-occurring Conditions
Among children diagnosed with TS, approximately 79 percent are diagnosed with at least one additional mental disorder, behavioural or developmental condition.
- ADHD (attention deficit hyperactivity disorder): 64 percent
- Behavioural Conduct problems: 43 percent
- Anxiety disorder: 40 percent
- Depression: 36 percent
- OCD (obsessive compulsive disorder): 33 percent
- Developmental delay: 28 percent
Treatment
Psychological counselling and medication are the most effective ways to manage the symptoms of TS. The good news is that most children/teenagers with TS are usually not significantly impaired by the symptoms and tics and do not require any pharmacological treatment. However, for the small percentage who present with severe symptoms that impair functioning and cause pain, medication is helpful.
Medication options include:
- Dopamine receptor blockers and depleters to control severe tics
- CNS stimulants to help improve attention and concentration for kids with TS and ADHD
- Noradrenergic drugs may help control behavioural symptoms e.g. impulse control, rage
- Serotoninergic medications (antidepressants) may help control symptoms of OCD and depression
Psychological options:
- Counselling can help child/teenager and family deal with the social and emotional aspects of TS
- Relaxation exercises and bio feedback methods may also be helpful to help child/teen to reduce and manage stress, which helps reduce tics and other symptoms
- Support groups: in person or on-line
- Comprehensive Behavioural intervention for Tics (CBIT) combines six strategic therapeutic components to help manage tics (tourettesyndrome.ca). The six components include psychoeducation, self-awareness training, relaxation training, tic analysis, competing response (tic blocker), social support
What Can Parents Do
Support of parents, family and friends is critical to help child/teen deal with TS. Other ways a parent/parent can help include:
- Follow up with appointments, counseling, etc.
- Ensure medications are taken if prescribed and monitor for any side effects, changes in behaviour
- If child/teen has a co-occurring condition, ensure that treatment plan is also followed
- Talk with, listen to and support child/teen. Validate concerns, be there, show love
- Do not undermine, mimic or embarrass child/teen when expresses feelings, experiences tics
- Work with school, help develop learning plan e.g. IEP, review learning environment
- Maintain healthy, daily routine: diet, exercise, chores, playtime, social media time, homework, bed time
- Work together as a family unit: meal times, activities, family time, one on one time
- Encourage child/teen to get involved in after school activity, hobby. Many experts say that when engrossed in an activity, tics become less frequent and milder
- Learn all you can about TS from reputable websites e.g. Tourette Canada (Tourette.ca) Tourette Association of America (Tourette.org)
- Encourage child/teenager to attend support group, learn about TS, participate in youth ambassador program for TS, and take an active role in treatment/care plan
- Kids with TS are often more supportive and understanding of others’ feelings and disabilities. Encourage child/teen to volunteer and help other kids/adults. This will help empower them, build confidence and self-esteem
- Kids with TS are at increased risk of being bullied. Talk with child/teenager about bullying behaviour, the bully circle. Review school’s anti-bullying policy and help child/teen develop strategies to deal with bully
