Navigating a Tourette Syndrome Diagnosis With Your Child

At AdventHealth, we understand that there are many things beyond our control when it comes to why certain conditions affect some children. Tourette syndrome (TS) is a neurological disorder characterized by uncontrollable motor and vocal tics that affects about one in 160 children. It was named for a French neurologist, Georges Gilles de la Tourette, who observed what he called a “tic malady” with a childhood onset in nine of his patients.

As parents, it can be upsetting to see your child struggle with these tics — and just as overwhelming if they receive a Tourette’s diagnosis. That’s why we’re here to emphasize what you can control as you help your child navigate Tourette syndrome including recognizing symptoms, steps to take, how to best support your child and more.

Tourette Syndrome Diagnostic Criteria

For TS to be diagnosed, your child would have at least one motor (movement) and one vocal (verbal) tic that occur several times a day nearly every day or in cycles for more than a year. Motor and vocal tics do not necessarily occur at the same time.

The onset of the tics is before age 18, and most frequently between the ages of 5 and 9. Children with TS often have multiple tics that can change over time in severity and complexity.

Risk Factors for TS

Family history impacts the risk of developing Tourette’s. According to the CDC, if a parent has TS, there’s a 50% chance they will pass it on to their children. It’s common for a parent to realize that they have also had Tourette’s since childhood when their child is diagnosed.

Tourette’s is more commonly displayed in males. If a boy inherits the Tourette’s gene, there is a 99% chance he’ll exhibit at least one sign of TS. For girls who inherit the gene, there is a 70% chance of showing signs.

Symptoms of Tourette Syndrome

Tics can start gradually and increase over time. They can come and go, and some children are able to hold them in while they are in public, only to experience them worse at home.

Here are some of the symptoms you might notice in a child with TS. Each individual’s experience varies:

Motor Tics:

• Abdominal wall jerks
• Blinking
• Eye movements
• Facial grimacing
• Head jerking
• Knuckle cracking
• Little jumps while walking
• Mouth opening
• Muscle jerks
• Shoulder shrugging

Vocal Tics:

• Barking
• Coughing
• Coprolalia (involuntary, uncontrollable cursing)
• Echolalia (repeating the same words or phrases)
• Gagging
• Grunting
• Sniffling
• Snorting
• Squeaking
• Throat clearing

Some tics are considered simple — involving a limited number of muscle groups (blinking, jerking), and others complex ­— involving several muscle groups (jumping while walking, coprolalia).

Active symptoms often coincide and worsen with excitement, overstimulation, stressful situations, illness or fatigue.

Comorbid Conditions Commonly Seen With Tourette’s

There are a number of comorbid conditions — disorders that occur simultaneously in one person — seen often in TS patients, including:

• Attention deficit hyperactivity disorder (ADHD)
• Anxiety disorders
• Autism spectrum disorder (ASD)
• Depression
• Learning disabilities
• Obsessive-compulsive disorder (OCD)
• Oppositional defiant disorder (ODD)
• Sleep disorders
• Trichotillomania (hair-pulling disorder)

It has not been determined why other disorders tend to coincide with Tourette syndrome. Some theories suggest a common root cause with certain neurological similarities between TS and symptoms of other disorders like OCD and hair-pulling. For example, patients often experience a “premonitory urge,” or an uncomfortable sensation, before a tic occurs in Tourette’s as well as before pulling their hair in trichotillomania. The discomfort is relieved by performing the action. This concept also plays out in OCD patients who feel that they must act out a repetitive “compulsion” to relieve an obsessive thought.

Other comorbid disorders such as anxiety, depression and sleep disturbances are likely brought on or made worse from the distress of living with Tourette syndrome, along with any biological predispositions.

Misdiagnoses and Myths

Sometimes Tourette syndrome can be misdiagnosed as another condition, such as allergies for instance, if a patient’s tics are coughing and sniffling. The key to determining if it’s a tic is if the movements look the same and the vocalizations sound the same every time. There may be a sense of urgency or angst associated with the tic as if they’re trying hard to release it, much like a sneeze that has to come out or an itch that must be scratched.

It’s also important to highlight a common myth, that TS is only characterized by the symptom of involuntary, constant cursing (coprolalia) as seen in the media, often at patients’ expense as Tourette syndrome is not a joke. While coprolalia is a Tourette’s symptom, it’s seen in about 10% of those with TS and causes them great suffering.

Be patient and kind regarding any symptom or tic related to TS. Telling the person to stop, making fun or drawing attention to it not only makes the tic worse, it can also negatively impact their self-esteem.

How to Help Your Child With Tourette Syndrome

Tourette syndrome doesn’t decrease life expectancy and while there is no cure, many patients with TS go on to live productive, meaningful lives. However, living with TS can be very uncomfortable, distressing and exhausting. And many children with TS experience bullying, social isolation and low self-esteem because of the nature of the symptoms.

Sometimes tics can improve to the point where they’re barely noticeable later in the child’s life, while for others the symptoms worsen in early adulthood. The best thing we can do for our kids as parents is to show them unwavering support on their journey with Tourette’s and help them build a solid support system among their family, friends, care team and teachers.

Here are steps you can take to help your child navigate this challenging diagnosis:

• Make an appointment with your child’s pediatrician; bring a list of symptoms, history and questions for their provider
• Your pediatrician may refer your child to specialists such as a pediatric neurologist and/or a counselor; be sure to attend all appointments with your child
• Explain your child’s Tourette syndrome diagnosis in a child-friendly way using words they’ll understand; if you have it too, you can use it to relate to your child and let them know they’ll be OK
• Let them know they’re perfect just the way they are, they did nothing wrong and that Tourette’s isn’t contagious
• Talk to your child’s school and try to have accommodations made as school can be challenging for a child with TS; they may benefit from being in classes with fewer students, having more time to finish assignments and personalized attention
• Nurture your child's self-esteem by supporting their interests and friendships — both can help build self-esteem
• Do calming activities together as part of your child’s routine, like slow, deep breathing from the diaphragm with a focus on counting each breath as it goes in and out
• Join a local Tourette syndrome support group to help you and your child cope, or start your own

Help for the Present and Hope for the Future

You envision a long, happy, healthy and fulfilling life for your child. When you suspect something isn't quite right neurologically, it’s natural to worry. We're here to restore your hope.

At AdventHealth Pediatric Neurology, we’ll get to the heart of your child’s condition, using the latest diagnostic tools and neurological treatments for children. Our whole-person philosophy ministers to every aspect of your child's health, including nutritional, emotional and spiritual support and guidance.

Learn more about how we can help here.