Tics and Tourette's syndrome

Tics are sudden, rapid and repeated body movements or sounds that serve no purpose. They  are involuntary meaning your child is not doing them by choice.

The movements (called motor tics) can affect any part of the body although most often 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. This means they involve just one muscle or making a noise.

Tics can also be complex. Complex tics involve lots of muscles moving together or spoken words, for example jumping on the spot or repeating words.

Some tics can be hard to spot whereas others can be very noticeable to other people.

 Although tics vary from person to person, they often share certain traits.

When do tics happen?

You may be able to predict when your child will have tics. Some children have lots of tics when watching TV or playing video games. Other children 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’. This is an odd or unpleasant sensation that builds up until the child tics. The tic relieves the sensation. Some children describe this as a sense of pressure or like the feeling they get if they need to 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 children often find it hard to supress a tic for long period of time.

It can be hard to describe what it feels like to have a tic. 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. This is what it feels like to have an urge to tic.

Examples of tics:

Tourette’s syndrome is just one of several names doctors use to describe a child's pattern of tics. Although doctors use different labels, they think that tic disorders represent points on a spectrum. They all share the same underlying cause.

The diagnosis is based on the type of tics your child has and how long they have had them.

• Provisional tic disorder. This is when a child has had tics for less than 1 year.
• Chronic motor tic disorder. This is when your child has motor tics only for more than 1 year.  
• Chronic vocal tic disorder is rare.
• Tourette’s syndrome. This is when a child has both motor tics and vocal tics that have been present for more than 1 year. 

Children with any diagnosis may have only mild tics that do not bother them much. Some children have symptoms that require support to manage them.

Doctors don't fully understand why tics happen. Some studies suggest they are due to how the brain forms circuits across its different parts. Some think 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. 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.

Children with Tourette’s syndrome are more likely to have one or more of the following conditions:

• ADHD
• Obsessive compulsive disorder
• Anxiety or depression
• Challenging behaviours or rage attacks

There is no blood test or brain scan available to diagnose Tourette’s syndrome.

A doctor may ask you about the movements and noises that your child makes. They may 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.

Try to do a video of your child displaying any movements or noises. This can be helpful for doctors when making a diagnosis.

Tics are very common in childhood. 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 1 year it is likely they will continue to have tics into their teenage years.

It is common for children to have times when they have lots of tics (waxing) and then settle to having fewer (waning). These ups and downs may be caused by periods of excitement (holidays) or stress (exams), illness or changes to routine. Sometimes there is not an obvious cause.  

Tourette’s syndrome tics usually start at around 3 to 7 years of age. They are typically mild at first. Tics can become more bothersome and complex as children reach the end of primary school or the beginning of secondary school.

Symptoms usually improve as teenagers get older. 4 out of 5 will see 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.

Speak to your GP if you're concerned about tics or if you need support or advice.

Speak to your GP if tics:

• begin before your child is 3 years of age
• occur very regularly or become more frequent or severe
• are associated with a temporary loss of awareness
• are associated with your child losing skills that they previously had (developmental regression)
• cause emotional or social problems, such as embarrassment, bullying or social isolation
• cause pain or discomfort (some tics can cause the person to accidentally hurt themselves)
• interfere with daily activities (such as walking, eating, drinking), school or work
• are accompanied by anger, depression or self-harm

Many children with tics are able to manage them without needing any treatment. Education and self help tips are often very helpful.

It is important to help your child understand their condition so they 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 may be considered if tics are having a significant impact on your child's daily life or emotional wellbeing.

Often a referral to the Child and Adolescent Mental Health Service (CAMHS) is helpful. They can help manage anxiety, frustration and low mood.

Following on from that initial work, there may be specific people in your local CAMHS team who are trained and can offer specific psychological therapies, aimed at the tics. These include:

·      Habit Reversal Therapy

This aims to help your child develop a behavior or 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 reduce tics.

·      Exposure with Response Prevention (ERP)

ERP helps your child get used to and tolerate the unpleasant sensations that are often felt just before a tic. This can stop the tic occurring.

Medicines

Medicines are only used in severe cases to help reduce tics. They often do not stop them entirely. These medicines need close monitoring and are usually started by a hospital paediatrician or child psychiatrist (CAMHS). Medication can be used when symptoms are disruptive and then stopped again when things improve. They may be used alongside psychological therapies or after trying these therapies unsuccessfully.

If your child also has a related condition like OCD (obsessive complusive disorder) or ADHD (attention deficit hyperactivity disorder), then getting the appropriate support for that condition will often help their tic control.

There is a lot of useful information on the different types of treatment on the Tourette’s action website. 

Worry or embarrassment about the tic can make them worse.  

Things you can try to reduce the impact of tics:

•       Try to ignore tics when they happen. Drawing too much attention to a tic may make it worse

•       Do not tell your child off when their tic happens

•       Be aware that your child may hold their tics in (suppress them) throughout the day and let them out when they are at home

•       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. This may help your child feel less pressure to hide them. Speak to your child's teacher. 

•       Let those around you know about your child’s tics, what helps and doesn’t help

•      Speak to your child's school about managing tics

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 your child for example the temperature or video games.  Tiredness can also affect tics.

Prevent tiredness:

•       A consistent bedtime routine helps to promote good sleep. It is helpful to get up at a similar time each day. This helps your body to maintain a regular sleep cycle.

•       A warm bath an hour or so before bed can help to relax your child. 

•       Avoid naps

•       Once your child is in bed encourage them to read or listen to some relaxing music. Keep lights dim. Avoid doing activities that are stimulating.

•       Avoid energy drinks and caffeine

•       Avoid screens in your child’s bedroom for example tablets, smartphones or television

Manage anxiety: 

•       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

•       Anxiety about tics can often be reduced by talking more freely about tics to others. Let others know how to respond and help your child develop self confidence. 

Here are a few ideas to help reduce the impact of tics:

Websites

  Tourette's Action has a range of information about tics and Tourette’s syndrome. They have a fantastic section for teachers which is full of helpful resources: Advice for teachers. 

 Read the Great Ormond Street Hospital Tourette syndrome information pack.

Books for young people:

 I Tic by Abby Hargrove (Recommended 6 yrs +)

 Can I tell you about Tourette syndrome? by Mal Leicester (recommended 9 yrs +)

   The Tourette’s Survival Kit by Tara Murphy and Damon Millar (15 yrs +)  

  Nix your tics by B. Duncan McKinlay (15 yrs +)

- Welcome to Biscuit Land: A Year in the Life of Touretteshero by Jessica Thom (adults)

   Coping with Tourette Syndrome: A Workbook for Kids with Tic Disorders by Sandra Buffolano (workbook, 10 yrs +)

Books for parents and carers:  

  Tic Disorders: A Guide for Parents and Professionals by Uttom Chowdhury and Tara Murphy

  A Family's Guide to Tourette Syndrome be 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