Tics and Tourette syndrome in children and adolescents

You may be hereditarily predisposed to developing tics. This means that you are born with certain genes that increase your risk of developing tics. Therefore, tics occur more often in some families. There is also a correlation with other mental disorders such as OCD and ADHD. For example, a child who has tics may have a parent with ADHD or OCD.

If you are hereditarily predisposed to tics and also experience something that causes tension and stress, the disorder may manifest itself. Tension and stress may be caused by being bullied at school, that your parents are getting divorced or sadness resulting from, for example, a death in the family. Infections (for example a sore throat) may also trigger tics in some individuals. Often, however, there is no clear reason why a child or an adolescent develops tics or Tourette syndrome.

Simple movement tics are a fast movement involving one or a few muscle groups. For example:

• blinking your eyes
• wrinkling your nose
• grimacing with your mouth
• yawning
• rapid head movement
• jerking shoulder
• jerking leg or foot.

Complex movement tics are composite tics in which multiple muscle groups are used. For example:

• bending your arm behind your neck
• clapping
• jumping
• kicking yourself
• lying down.

Simple sound tics are fast and sudden sounds. For example:

• sniffling
• throat clearing
• coughing
• short scream
• puffing.

Complex sound tics are more complicated sounds. For example:

• words
• sentences
• questions.

Tics can also manifest themselves as a sense that something does not feel right. For example, you may have touched one side of a table and you then also need to touch the other side of the table for it to feel right.

Some children and adolescents also have mental tics. That is words or phrases that repeat themselves inside their head. For example, this could be the word ‘no’ or a phrase like ‘the sun is so red’, which runs around in circles inside their head. Mental tics can be compared to not being able to get a song out of your head. This involves words or images that are difficult to let go of and that are annoying, but that you are not afraid of.

Sometimes you can feel a prior tension or discomfort in the area where a tic is developing. This is called a pretic. After the tic has manifested itself, you will typically experience a sense of relief. It can be similar to the relief you feel when you relax after having tensed up your muscles.

Some children and adolescents can hold back tics, but this often causes increasing bodily discomfort. For example, a child may experience this during a school lesson where he or she just does not want to draw attention and therefore struggles to hold back the tic.

You will initially be invited to a clarification consultation at the Centre for Child and Adolescent Psychiatry. Here you will talk to a therapist – typically a nurse, psychologist or doctor.  The therapist will assess whether you need to be examined further for tics or whether there may be other physical or mental disorders for which you need to be examined first.

After the clarification consultation, you and your parents will be invited to an extended consultation in the Tourette Outpatient Clinic.

At the consultation, you and your parents will have the opportunity to talk about your tics, when they occur and how severe they are. The therapist will ask about your development since birth, how you do at school, and how you feel in your spare time. The therapist will also ask if you have other difficulties, for example if you have difficulty concentrating, if you function well socially etc.

You will also need to fill in a questionnaire about your tics and their degree of severity.

Perhaps your therapist will ask for a home video recording showing your tics.

Based on the extended consultation, your therapist will assess whether you should start treatment for tics or whether more examinations are needed, for example if you experience other difficulties.

A medical examination or a psychological test may be needed. It may also be that your parents and your therapist are to participate in a network meeting with, for example, the teachers from your school. Sometimes your school is where you first need help. This may, for example, be help getting started with an assignment or structuring an assignment and getting a better overview. It may also involve getting a more suitable seat in class, where there is less noise, or to have breaks included during the school day.

Based on the extended consultation with your therapist and any further examinations, you may be diagnosed with tics or Tourette syndrome.

It may also be that your therapist finds out that you have symptoms of another mental disorder. In such case, you may be called in for a new examination for this or be examined further somewhere else, for example by the school psychologist or a private practicing psychologist.

• 40% of children and adolescents with Tourette syndrome also have OCD
• 60-80% of children and adolescents with Tourette syndrome also have ADHD.

Especially OCD and ADHD are often seen together with tics or Tourette syndrome. Some also suffer from autism, depression or sadness in addition to tics or Tourette syndrome. Some experience learning difficulties.

Many sufferers of tics or Tourette syndrome have sleep disorders, for example because they have tics when they sleep. They may also have difficulty falling asleep or sleepwalk. Lack of sleep may cause more tics.

Many have muscle pain, such as neck pain, back pain or jaw pain, as a consequence of their tics.

A functional analysis is performed together with you and your parents. The functional analysis focuses on what makes your tics worse and what you can do to alleviate them.

For some, for example, their tics get worse when they are out shopping. For others, the tics may get worse due to tiredness or stress. It may also be that you have more tics when you are really excited (for example on Christmas Eve). For many, their tics also get worse if others comment on them.

What can alleviate tics differs from person to person. But it may, for example, be taking a hot bath or jumping on a trampoline.

Through the functional analysis, you will find out what makes precisely your tics worse and what you and your parents can do to alleviate them.

HRT is a form of therapy where you focus on one tic at a time. Here, the aim is to find a countermovement that can, so to speak, block the tic.

If, for example, you have a tic where you raise your shoulder, you practise keeping your arm close to the side so that the shoulder cannot be raised. This is known as a countermovement. It may also be that you have an eye-blinking tic. Here, you will then practise blinking regularly while looking at a particular spot. This means that you practise blinking more systematically as a counter movement to the uncontrollable tic.

HRT is about keeping practicing the countermovement. Over time, the urge to tic will diminish or disappear completely.

In ERP – exposure and response prevention – you work with all your tics at once. You practise feeling the urge to tic in your body (pretic), and you practise accepting the urge to tic. You hold back your tics, but practise remaining neutral about them.

A therapeutic course at the Tourette Outpatient Clinic includes training in both methods: both HRT and ERP. The tics training typically takes place over 9 sessions distributed over 23 weeks. A manual has been prepared for the training at the Tourette Outpatient Clinic.

Your sleep is important, so try to relax before bedtime. Maybe drink a glass of warm milk, listen to an audiobook or to some soothing music. It is a good idea to avoid screens before going to sleep. If you have great difficulty falling asleep, a weighted duvet may help.

Many children and adolescents with tics or Tourette syndrome experience a positive effect of exercise and physical activity. Ride a bike, jump on a trampoline or be active in some other way. It can probably reduce your tics and improve your sleep.

Seek support for what causes tension and stress. For example if you find it difficult to get started with an assignment, ask your parents or teacher for help. It may also be that you need to be shielded from distractions, for example in class. Tell your teacher so that he or she can help you.

If you find it difficult getting an overview of everything you need to do in your everyday life or your homework, you may need someone to help you with, for example, getting a calendar, structuring an assignment or something else. Seek help – it is much better than putting pressure on yourself.

Many find it helpful if their friends know that the tics are ‘just’ tics. This may help you avoid, for example, being teased or having to face a lot of questions. However, it can be difficult to tell others about your tics, and you may need the help of an adult for this.

Your child’s tics are not intentional. So do not comment on them. It will only make his or her tics worse.

If your child has many tics, you can help by trying to distract him or her. Suggest, for example. “Would you like to play a board game” or do something else that your child enjoys.

If your child is fully concentrated on a task, there may be ‘less room’ for tics. Therefore, if your child has many tics, you can help by getting him or her started on a task that is pleasurable and requires concentration. This may, for example, be building something with LEGO, doing a jigsaw puzzle or drawing.

Help your child develop good habits around bedtime. Avoid screens, but feel free to read a bedtime story, listen to an audiobook or soothing music. For some children, it can be helpful to be tucked in under a weighted duvet. Some may need melatonin for their sleep problems.

Many children with tics or Tourette syndrome experience fewer tics and sleep better after physical activity. You can therefore encourage your son or daughter to jump on a trampoline, play football, go for a walk – or engage in other physical activity.