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It is projected that up to 1% of the UK population has Tourette syndrome, affecting 1 out of every 100 school children. Though the neurological disorder is relatively common, it is widely misunderstood.
What is Tourette syndrome?
Tourette syndrome, sometimes abbreviated to TS, is a neurological disorder causing an individual to produce uncontrolled and unintentional sounds, speech and bodily movements. These inadvertent symptoms of Tourette syndrome are referred to as ‘tics’.
Tourette syndrome was named after the French physician Gilles de la Tourette, in 1885. He described nine patients with symptoms in line with involuntary movement, imitation of the movements and speech of others, and coprolalia, which is the unintended use of foul language. However, it was Jean-Martin Charcot who first reported the syndrome in 1825, who noted that in a woman of high nobility, the presence of what is now known as coprolalia was not in alignment with her other refined behaviours.
What causes Tourette syndrome?
As with many neurological conditions, the root cause of Tourette syndrome is unknown. However, it is known that the condition is genetically passed on. Research has shown that Tourette syndrome is carried in a dominant gene, so the likelihood of the condition being passed down from parents to their children is around 50%. It is also thought that whilst one may carry the gene, Tourette syndrome can be caused by a blend of different factors, including the way that the foetus’ genes interact with environmental factors.
There is research to suggest that the following factors can be associated with the risk of Tourette syndrome:
- Some children may develop tics if they have had a streptococcal infection, as they may be at risk of developing movement disorders.
- There is strong evidence to suggest that smoking during pregnancy can increase the chance of developing tics after birth.
- A low birth weight (less than 5 pounds 8 ounces) has been associated with Tourette syndrome, though most babies with a low birth weight do not develop the condition.
- Delivery complications are also known to potentially trigger the onset of tics in children, such as the premature rupture of the membranes leading to abnormalities in the amniotic fluid. This may occur if the doctor has to manually puncture the amniotic sac to speed up the delivery process.
Tourette syndrome can also be induced by the unusual breakdown of dopamine in the brain.
What are the symptoms of Tourette syndrome?
The symptoms of Tourette syndrome span widely, but are usually characterised by one or more of the following:
- Echolalia: Repetition of speech that has been heard.
- Echopraxia: Involuntarily mimicking someone else’s movements.
- Coprolalia: Involuntarily using foul language/gestures.
- Tics: Vocal tics may be produced by the mouth, nose or throat. Motor tics involve the movement of one group of muscles or one body part.
The symptoms of Tourette syndrome span widely, but are usually characterised by one or more of the following:
- Throat clearing.
- Clicking noises.
- Shouting, usually a word or phrase.
Motor tics may include:
- Nose twitching.
- Head twitching.
- Tongue movements.
- Facial expressions including grimacing.
- Touching things.
- Making foul or obscene gestures.
Tics can be more frequent and pronounced under stress. Illness, fatigue and excitement can also make the symptoms of Tourette syndrome more pronounced. Tics may not always be consistent in severity or frequency, and can also be more pronounced at the onset of puberty. Caffeine has been known to stimulate the production of dopamine, thus people with Tourette syndrome should avoid food products containing caffeine.
What are the different types of tics?
As mentioned, tics can be categorised into two groups, vocal tics and motor tics.
- Motor tics can be simple or complex. Simple motor tics include one tic occurring at a time, such as blinking or jerking. Complex motor tics may include large muscle groups that are responsible for hopping or jumping, and may involve more than one tic at a time.
- Vocal tics can also be simple or complex. Simple vocal tics may involve more simple sounds such as sniffing or throat clearing. Complex vocal tics involve words and phrases.
Who is more at risk of Tourette syndrome?
Boys are almost four times more likely to have Tourette syndrome than girls, and Tourette’s is more likely to be more severe. Additionally, individuals with ADHD (Attention Deficit Hyperactivity Disorder) are more likely to develop tics, thus, the condition is highly associated with Tourette syndrome. Tourette syndrome also commonly coexists with other disorders such as learning difficulties, behavioural issues, Obsessive-Compulsive Disorder (OCD), and sleep disorders. Currently, around 85% of people with Tourette syndrome will also have a coexisting condition.
Living with Tourette syndrome
Tourette syndrome is a very challenging condition to live with. For children between the ages of 0 and 12, when tics emerge or potentially increase in severity, everyday life can be difficult as children try to navigate school settings. The mental frustration of your body performing involuntary acts can have detrimental effects on the individual’s mental health. It can be equally as challenging throughout adolescence and adulthood, as people with the condition find it more difficult to find their place in society.
Whilst people with Tourette syndrome often learn how to suppress their tics for a period of time, this is exhausting for the individual and is subject to triggers outside of their control. Many children with Tourette syndrome are bullied due to tics, thus it is vital that teachers, families and peers are educated on the condition.
Additionally, Tourette syndrome can be isolating due to the obscene nature of some vocal and motor tics. Many members of the public do not have awareness of Tourette syndrome, and may not be able to distinguish intentional offensive language from unintended tics. However, the charity Tourettes Action has found that only 10% of people with TS have coprolalia.
People with Tourette syndrome have a normal life expectancy and can live full lives in spite of their diagnosis, as symptoms often decrease or disappear as they get older. Many people with Tourette syndrome find that their symptoms decrease as they approach adulthood, with only 33% of people who suffered from Tourette syndrome as a child having symptoms that last throughout their entire lives. With a strong support system and inclusivity, as well as different treatments, people with Tourette syndrome can live a happy and full life.
How is Tourette syndrome diagnosed?
There isn’t one particular test that can diagnose Tourette syndrome. Instead, it is a process of elimination. The condition has distinctive symptoms that are not usually associated with other conditions, but these symptoms have to persist for a certain amount of time to be considered a symptom of Tourette syndrome.
Tourette syndrome can be diagnosed by a neurologist, a psychiatrist or a paediatrician, for which a referral is needed from your GP. In the lead up to getting a diagnosis, it can be helpful for an individual to keep a diary of symptoms, such as vocal or motor tics, but also any other symptoms that appear unusual. To be diagnosed with Tourette syndrome, there needs to have been occurrences of motor or vocal tics for at least one year, prior to the age of 18, which are not caused by any other medical condition. Healthcare professionals may also use scans and blood tests to rule out brain conditions.
Unfortunately, if tics are mild, a child can go undiagnosed for a while, as these may not appear to be significant to some practitioners or parents. They may be confused for other problems, such as asthma. After diagnosis, the line of treatment involving different specialists will be discussed. The individual may be entitled access to different local services, depending on the severity of their condition.
Treatment for Tourette syndrome
Some medications that reduce levels of dopamine, a hormone that is responsible for sensations of pleasure and reward, can help to control tics or lessen their severity. The commonly administered medications contain the drugs haloperidol, pimozide, risperidone and fluphenazine. However, some people have found there to be unwanted side effects, such as gaining weight and further uncontrolled movements.
Additionally, some medications have been known to trigger depression and thoughts of suicide. Other medications that are commonly given as treatments for Tourette syndrome include guanfacine and clonidine, which are typically administered for high blood pressure. The process of finding a helpful medication is different for every person, as they have different results for different individuals.
Antidepressants are sometimes given to individuals with Tourette syndrome to counteract symptoms of depression. These may include SSRIs (Selective Serotonin Reuptake Inhibitors).
Medications that are used to treat people with ADHD might be useful, though in some people, this can make tics worse. Some research has shown that anti-seizure medications can be helpful for people with Tourette syndrome.
Some people with Tourette syndrome who have persistent facial tics may choose to have Botox injections. Botulinum toxin injections can help to control these tics by paralysing the muscles that cause these tics to happen. This is a temporary solution, and must be readministered once the injection has worn off after a few months for repeated results.
For every medication, there can be side effects that range from mild to severe, and an individual taking any medication for Tourette syndrome should be monitored by a specialist.
Cognitive Behavioural Intervention Therapy
A specialised form of cognitive behavioural therapy that is tailored to tics, called Cognitive Behavioural Intervention for Tics (CBIT), is one method used to help in the reduction of tics and lessening their severity.
CBIT is founded upon three principles:
- Tics improve and get worse on their own.
- Tics are typically in response to an urge or sensation.
- Tics can be suppressed temporarily.
This method of therapy involves the individual with the condition and a specialist working together to implement the following techniques over time:
- Pay attention to situations where tics improve or get worse and change the situation.
- Look at how each tic reacts to any urges and understand the relationship between the tic and the urge.
- Discuss any steps that can be taken to fight the urge before the onset of the tic, and try to postpone or prevent the tic.
- Formulate adverse responses to the tic that can counter it, e.g. pushing your shoulder down when you sense an involuntary shrug is about to occur. This is referred to as ‘habit reversal’, where an action that cannot occur at the same time as the tic is performed to prevent the tic from happening.
Psychotherapy may offer significant improvement of the other issues that may be present alongside Tourette syndrome, such as anxiety and depression, low self-esteem and ADHD.
Other helpful tools
Many people with Tourette syndrome report that the frequency and severity of their tics lessen when they are engrossed in an activity. Some people can even sing without their tics presenting an issue. Using sports and creative hobbies such as art and music to focus the individual’s attention can provide respite from tics, and improve the individual’s quality of life and self-esteem.
Who can support?
Tourettes Action is a charity that leads awareness and support for Tourette syndrome, for individuals with the condition and their families. They offer online support groups, educational resources for schools, grants for equipment to support individuals with Tourette syndrome and information on financial benefit claims.
The Brain Charity offers practical help and emotional support for people with Tourette syndrome, including counselling, telephone therapy and social activities.
You can also find relevant information about local support groups for families and children with Tourette syndrome by contacting your local family and children’s service, which is usually accessed via your GP.