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Most people will have heard of Tourette’s syndrome from films and TV. The media tends to show the most severe symptoms, such as uncontrolled swearing or tics that cause injuries, which can be worrying for families when a child or young person is newly diagnosed with tics. Thankfully these severe symptoms are very rare.
Tics are sudden, rapid and repeated body movements or sounds that serve no purpose and are involuntary (children and young people are not doing them by choice).
The movements – called motor tics - can affect anywhere in the body although most typically affect the head and neck. Common examples of motor tics include rapid blinking, twitches in the neck and nose wrinkling. The sounds – called vocal tics – commonly involve sniffing, tutting or throat clearing noises.
Tics can be simple – involving just one muscle or making a noise - like the examples above. Tics can also be complex - lots of muscles moving together or spoken words – for example jumping on the spot or repeating words. Some tics can be hard to distinguish from normal movements whereas others can be very noticeable to other people.
Tics often occur more frequently in predictable settings or situations. Some children will have lots of tics when watching TV or playing video games, others will experience more tics at home than at school. Although these situations are different from child to child most families can pick out the context in which their child is most likely to tic.
Children and young people often get a ‘premonitory urge’, an odd or unpleasant sensation, that builds up until the child tics which relieves the sensation. Some children describe this as a sense of pressure, or like the feeling then get if they need to cough or scratch an itch. Other children find it very difficult to describe.
Although tics are involuntary in the sense that people do not choose to do them, they often are able to suppress or ‘hold in’ a tic if they feel they need to. This does not stop the urge building up and people often find it hard to supress a tic for extended periods of time.
It can be hard to describe what it feels like to have a tic, but try the following exercise:
Try to not blink, for as long as you can. The longer you don’t blink, the more you want to blink, and that feeling is like what it feels like to have an urge to tic.
Here are some examples of tics:
(Sudden movement that involve a single muscle group)
(A group of movements that involve more than one muscle group)
Head twitching/ bobbing
Facial grimace whilst sticking out tongue
Mimicking movements by others
(tics involve one simple sound)
Repeating words and phrases out of context (these can be socially unacceptable words or phrases)
Tourette’s syndrome is just one of several names doctors use to describe a child or young person’s pattern of tics. Although doctors use different labels, they think that tic disorders represent points on a spectrum, and all share the same underlying cause. The diagnosis doctors make is based on the type of tics a person has and how long they have had them for.
Children with any diagnosis may experience only mild tics that do not bother them much or may experience symptoms that require support to manage.
The underlying cause for tics is not yet fully understood. Some studies suggest this is due to how the brain forms circuits across its different parts and some suggest it is to do with the chemicals the brain uses to send signals. More evidence is needed before we can be sure.
A child’s genetics play a role. Around half of children who develop tics will have a close relative who also had tics. However, having tics does not mean you will pass this on to your child and around half of all children with tics do not have anyone in the family who has it.
Children with tic disorders often have other conditions such as obsessive-compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD) that likely share underlying causes.
It has been considered whether infections with Group A strep could cause tics. A recent large study from across Europe found no evidence that this was the case in tic disorders like Tourette’s syndrome.
Children with Tourette’s syndrome are more likely to have one or more of the following conditions
There is no blood test or brain scan available to diagnose Tourette’s syndrome. A doctor will need to ask all about the movements and noises that your child makes, ask questions to help them rule out other causes of unusual movements, and examine your child in order to make a diagnosis of a tic disorder.
If you can catch a video of your child displaying any concerning movements or noises, this can be helpful for doctors when making a diagnosis but do not worry if this is not possible.
Tics are very common in childhood. It is thought that up to 1 in 5 children may develop tics that settle down again very quickly at some point in their early life.
If a child has had tics for over a year it is likely they will continue to have tics into adolescence.
It is typical for children and young people to have periods where they have lots of tics (waxing) and then settle to having fewer (waning). These ups and downs may be triggered by periods of excitement (Christmas, summer holidays) or stress (exams), illness, or changes to routine but there is not always an obvious cause.
In most people with Tourette’s syndrome tics start at around 3 to 7 years of age and are typically less severe at first. Tics can become more bothersome and complex as children reach the top end of primary school/ early secondary school. Typically, symptoms then tend to improve as teenagers get older with 4 out of 5 seeing a significant improvement in their tics by the time they reach adulthood. Many people grow out of their tics entirely.
Tics are not usually serious, and they do not damage the brain. Sometimes they can disappear as quickly as they appear.
See a GP if you're concerned about your or your child's tics, you need support or advice, or the tics:
Many children and young people with tics will feel that they are able to manage with them without needing specific medical treatments. Education and self-help tips are often very helpful for most people. It is important they are helped to understand their condition and feel supported at home and at school. Your child may find it helpful to have their teacher explain about the condition to the class.
Specific treatments would be considered if tics are having a significant impact on a child or young person’s daily life or emotional well-being.
The main psychological therapies for tics are:
· Habit Reversal Therapy
This aims to help the young person develop a behavior/action that is opposite to the Tic (that cannot happen at the same time as the tic) until the urge to Tic decreases
· Comprehensive Behavioural Intervention for Tics (CBiT)
A set of behavioural techniques to help learn skills to reduce Tics
· Exposure with Response Prevention (ERP)
This aims to help you, or your child get used to and tolerate the unpleasant sensations that are often felt just before a tic, which can stop the tic occurring
There are also medicines that can help reduce tics which are used occasionally in severe cases although most people find they do not stop them entirely. These medications require close monitoring and can only be started by a specialist within a Child and Adolescent Mental Health Service (CAMHS). Medication can be used for periods when symptoms are disruptive and then stopped again when things improve. These may be used alongside psychological therapies or after trying these therapies unsuccessfully.
If a child or young person with Tourette’s syndrome also has a commonly occurring related condition like OCD or ADHD, then getting the appropriate support for that condition will often be beneficial to tic control
When a child has tics, worry or embarrassment about the tic can make them increase in intensity of frequency. There are things you can try to reduce the impact of the tics:
• Try to ignore tics when they are occurring. Drawing too much attention to a tic may make it worse.
• Do not tell your child off when their tic occurs
• Be mindful that people can sometimes hold their tics in (suppress them) throughout the day and let them out when they are in the home environment
• Reassure your child that everything is OK and there is no reason to feel embarrassed
• It can be helpful for a young person’s peers to learn about their tics, so that your child feels less pressure to hide or suppress them. Teachers can support in this.
• Let those around you (i.e. close family or friends) know about your child’s tics as well as what helps and doesn’t help
• Speak to your child’s school so that management approaches can be agreed between you.
Tics can be made worse if the person is stressed, nervous, anxious or excited. Tics can also be triggered by certain things, which may be individual to the child/young person, e.g. temperature or video games. Tiredness can also impact upon tics.
To combat tiredness, try the following:
• Have a consistent bedtime routine helps to promote good sleep. It is also helpful to get up at a similar time each day. This helps your body to maintain a regular sleep cycle.
• Warm baths an hour or so before bed can help to relax the child and promote the bedtime routine. A bath can help raise body temperature, causing you to feel sleepy once your temperature drops again.
• Avoid naps
• Once your child is in bed encourage your child to read or listen to some relaxing music. Keep lights dim. Avoid doing activities that are too stimulating.
• Avoid energy drinks and caffeine
• Avoid screens in your child’s bedroom i.e., Tablets, smartphones, television
To combat anxiety, try the following:
• Exercise can reduce the intensity of the emotions felt, allowing your child to clearly deal with the issue more calmly.
• Encourage your child to spend time doing the things they enjoy the most
• Breathing exercises can help calm anxiety. Slow deep breathing, or a Progressive Muscle Relaxation can be beneficial.
• Anxiety about tics can often be reduced by talking more freely about tics to others, letting others know how to respond, and developing greater self-confidence.
Here are a few ideas to help reduce the impact of tics:
• Engage in an activity that utilizes your hands i.e. clay/play dough, origami
• Try putting something soft on the harder surfaces where you typically tic against (e.g. foam block) to avoid hurting your hands or fingers
• Try using different fiddle toys e.g. fidget spinner, fidget cubes, poppet
• Try blinking slowly on purpose
Full body movements
• Try warming up exercises (like what you do before and after exercise) in the morning and after periods of inactivity
Head shaking/neck jerking
• Heat therapy such as wheat germ pillow or hot water bottles can be applied to painful areas
• Try using chewable toys, lollies or chew gum (if age appropriate)
Consciously breath in through the mouth and out through the nose. This can help with calming a vocal tic
Tourette’s action ( https://www.tourettes-action.org.uk ) is a charity dedicated to support and research for tics and Tourette’s syndrome. Their website has a range of information about tics and Tourette’s syndrome for families, children and young people. They also have a fantastic section of the website dedicated to teachers, which is full of helpful resources: Advice for teachers (tourettes-action.rg.uk) .
Great Ormond Street Hospital have a wealth of information leaflets which can be found here:
For young people:
- I Tic – Abby Hargrove (Recommended 6 yrs +)
- Can I tell you about Tourette syndrome? - Mal Leicester (recommended 9 yrs +)
- The Tourette’s Survival Kit: Tools for Young Adults with Tics - Tara Murphy and Damon Millar. (15 yrs +)
- Nix your tics – B. Duncan McKinlay (15 yrs +)
- Welcome to Biscuit Land: A Year in the Life of Touretteshero – Jessica Thom, a YouTuber with Tourette’s Syndrome (adults)
- Coping with Tourette Syndrome: A Workbook for Kids with Tic Disorders – Sandra Buffolano (workbook, 10 yrs +)
- Tic Disorders: A Guide for Parents and Professionals – Uttom Chowdhury and Tara Murphy
- A Family's Guide to Tourette Syndrome – John T Walkup, Mink, Black et al
Many thanks to Dr Laura Bohane (Child Psychologist) and Dr Emma Blake (Paediatric Consultant, IoW), as well as the team from the North East and North Cumbria Healthier Together programme