Firstly I am not a medical doctor. The following is for informational purposes only. It may serve as a starting point if your child has recently been diagnosed. It should not replace any professional advice you have received.
The reason I include such blogs is because of my own experiences regarding diagnosis in the past. I received a diagnosis about one of my children but no one told me what it meant or where to seek help. I felt like I was drowning and I don’t want anyone else to every experience that again.
What Is Tourette Syndrome?
Tourette Syndrome was first described in the 19 century by Georges Gilles de la Tourette. It is a neurological disorder characterized by involuntary and uncontrollable tics. It affects more males than females and is usually first noticed in children between the ages of 2 to 6 years. But symptoms can appear at any stage between 2 and 14 years.
About 10 years after symptoms are first seen two thirds of those diagnosed will see a marked improvement. Many will no longer require treatment to control their tics. For some it may disappear. In the remaining third the symptoms do appear to lessen as they grow older. They too may no longer need treatment.
Some children with Tourette syndrome may also have other conditions such as ADHD, OCD, ASD, depression or anxiety. I have already covered these in separate blogs and videos and the links may be found above. Other issues may be presented such as pain from the tics, sleep and anger management problems.
Signs Of Tourette Syndrome.
The main symptoms of Tourette syndrome are the involuntary and uncontrollable Tics. These can be physical or vocal and may appear between the ages of 2 and 14 years in the child. Symptoms can be made worse by stress, anxiety or tiredness. Only about 1 in 10 people diagnosed with Tourette syndrome will swear.
Tics may be motor (physical) which are movements of the body. Or vocal tics which are sounds that a child makes with their voice. They may also be classed as simple or complex. Simple tics involve just a few parts of the body. Complex tics usually involve several different parts of the body and can have a pattern. Tics may become better when the child is calm or focused on an activity.
Examples of Motor tics can include:
Simple Motor tics: head jerking, shoulder shrugging, eye darting, mouth movements.
Complex Motor tics: repeating observed movements, stepping in a certain pattern, bending or twisting or hopping.
Examples of Vocal tics can include:
Simple Vocal tics: grunting, coughing, throat clearing, barking.
Complex Vocal tics: repeating their own words or phrases, repeating other people’s words or phrases, swearing.
We also have to remember that symptoms may worsen when the child or adult is ill, stressed, and anxious. They can also vary in type, severity and frequency from child to child and may change over time. They can also occur during sleep.
People with Tourette syndrome may also experience a premonitory sensation (strong urge) prior to a tic. These have been described as similar in nature to what we might feel before we need to sneeze or itch. This urge will only be relieved by the tic.
Causes Of Tourette Syndrome.
There is no known exact cause of Tourette syndrome as of yet. But it has been linked to a part of the brain that helps regulate body movement known as the basal ganglia. There is also some indication that the neurotransmitters, such as dopamine and serotonin, may also play a role. It is thought that there may also be some other factors involved such as a genetic component and environment.
Diagnosis Of Tourette Syndrome.
It is important that you contact your GP, or main doctor, as soon as you suspect something is wrong. As getting a firm diagnoses can help you access support and treatment for your child and gain a better understanding of the condition.
As there is no single test to get a diagnosis your child may be referred on the different specialists to get the diagnoses so go prepared. These professionals will need certain information such as how long the child has had the symptoms, any life stressors that have recently occurred, medications taken or other diagnosed conditions, plus family history.
They need to rule out other conditions and may request your child has a MRI scan and blood tests. The criteria they use to diagnose Tourette syndrome include:
- That both motor and vocal tics are present.
- The tics occur several times a day, on most days, and for more than a year.
- The tics began before 18 years of age.
- That no medication, medical condition has caused the tics.
- The tics must change over time in location, frequency, severity, type and complexity also.
Treatment Of Tourette Syndrome.
Sometimes treatment is required to help manage the symptoms. These can include behaviour therapy and medication. The aim with the treatment is to control the tics, prevent them from interfering with day to day activities and relieve any pain caused. If any other conditions are present they too will require treatment also.
Make sure you are prepared for your doctor’s visit. Have any questions you have about the diagnosis ready. It can be a shock when you receive any diagnosis so bring someone with you and write down your questions.These could include: some basic questions to ask your doctor include:
- What treatment, if any, is needed?
- If medication is recommended?
- If medication is needed what are the options?
- What types of behavior therapy might help?
More Information And Support.
- Find a support group.To help you, as a parent, understand, cope plus get information, tips and support from. Try to seek out a local Tourette syndrome support group where possible. I’ve listed some national support organizations where you can find more information below. Get to know your child’s rights and entitlements.
- You will need to be your child’s advocate.Unfortunately it is up to us as parents to help educate teachers and others about Tourette syndrome. Make sure you understand the condition yourself first and what recommendations to help your child is needed. There is guidance in Ireland for teachers on the SESS website but don’t rely on your child’s teacher looking this up. Your child’s education should meet your child’s needs these can include support, reducing the stress, extra tutoring, etc.
- It is important you help nurture your child’s self-esteem.Self-esteem can suffer in children and teens with Tourette syndrome. Support your child’s personal interests and friendships as both can help build self-esteem. Tourette syndrome may be embarrassing for them in public especially as they become teens. This may cause them to withdrawn socially. They can also be at a higher risk of developing depression and anxiety also as with other disabilities. Helping them manage their self-esteem can reduce this risk.
Ireland http://tourettealliance.org/about-tourette-alliance/
UK https://www.tourettes-action.org.uk/
OCD Ireland https://www.ocdireland.org/
ADHD Ireland https://adhdireland.ie/
ASD Ireland https://autism.ie/
Reach Out For Support.
Remember you are allowed to ask for support. No one is an island. In fact I would strongly advice you make sure you create a positive support system before you start to make any changes in your life. One part of that positive support system is working a therapist. Please reach out to a local therapist if you need to.
My Workbooks
I offer a variety of tips and discuss a range of topics in my workbooks The Building Blocks Of Self-Care, Moving Towards Self-forgiveness, The Little Book Of Reflection And Gratitude and Building Acceptance Into Your Life. You can purchase them on Amazon or here.
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