Tourette Syndrome (for Parents) (2024)

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  • What Is Tourette Syndrome?

    Tourette syndrome is a condition that causes uncontrolled sudden, repetitive muscle movements and sounds known as tics.

    Two types of tics are associated with Tourette syndrome:

    1. Motor tics: These are sudden, apparently uncontrollable movements such as exaggerated eye blinking, grimacing, head jerking, or shoulder shrugging.
    2. Vocal tics: These include repeated throat clearing, sniffing, or humming.

    Tics can be simple or complex:

    • Simple motor tics usually involve just one muscle group, such as eye blinking or grimacing.
    • Complex motor tics usually involve more muscle groups and might look like a series of movements. For example, someone might touch a body part or another person repeatedly. In rare cases, people with Tourette syndrome might have a tic that makes them harm themselves, such as head banging.
    • Simple vocal tics can be throat clearing, sniffing, or grunting.
    • Complex vocal tics can involve calling out, repeating other people's words (a condition called echolalia), or involuntary swearing (called coprolalia).

    At certain times, like when someone is under stress, the tics can become more severe, happen more often, or last longer. Or the type of tic may change.

    Some kids can hold back their tics for a short time. But as tension builds, eventually it must be released as a tic. And if a person is concentrating on controlling the tic, it may be hard to focus on anything else. This can make it hard for kids with Tourette syndrome to have a conversation or pay attention in class.

    The tics associated with Tourette syndrome tend to get milder or go away entirely as kids grow into adulthood. Until that happens, though, parents can help their child cope with the condition.

    What Causes Tourette Syndrome?

    Tourette syndrome is a genetic disorder, which means it's the result of a change in genes that's either inherited (passed on from parent to child) or happens during development in the womb. Tourette symptoms typically appear in childhood, usually when kids are between 5–9 years old. It's not very common,and boys are more likely to be affected than girls.

    The exact cause of Tourette syndrome isn't known, but some research points to changes in the brain and problems with how nerve cells communicate. An upset in the balance of neurotransmitters (chemicals in the brain that carry nerve signals from cell to cell) might play a role.

    Many kids and teens with Tourette syndrome have other behavioral conditions like ADHD, obsessive-compulsive disorder (OCD), learning problems, or anxiety.

    How Is Tourette Syndrome Diagnosed?

    To be diagnosed with Tourette syndrome, a child must have several different types of tics — specifically, multiple motor tics and at least one vocal tic for at least a year. They may happen every day or from time to time throughout the year.

    A child with Tourette symptoms may need to see a neurologist, a doctor who specializes in problems with the nervous system. The neurologist may ask the child's parents to keep track of the kinds of tics involved and how often they happen.

    There isn't a specific diagnostic test for Tourette syndrome. Instead, the health care provider diagnoses it after taking a family history, medical history, looking at the symptoms, and doing an exam. Sometimes, imaging tests like magnetic resonance imaging tests (MRIs), computerized tomography (CT) scans, electroencephalograms (EEGs), or blood tests can rule out other conditions that might cause symptoms similar to Tourette syndrome.

    How Is Tourette Syndrome Treated?

    Just as Tourette syndrome is different for every person, treatment can be different too. There isn't a cure for Tourette syndrome, but most tics don't get in the way of day-to-day life. If they do, doctors maysuggest medicines to help control symptoms.

    Tourette syndrome is not a psychological condition, but doctors sometimes refer kids and teens to a psychologist or psychiatrist. Seeing a therapist won't stop the tics, but it can help to talk to someone about their problems, cope with stress better, and learn relaxation techniques. A therapist also can help them with any other problems, like ADHD, OCD, and/or anxiety.

    Tics usually are most severe before the mid-teen years. Most people see great improvement in their late teens to early adulthood, though some will have their tics continue into adulthood.

    What Else Should I Know?

    Many people don't understand what Tourette syndromeis or what causes it, so they might not know how to act aroundsomeone who has tics. If people stare or comment, kids and teens can feel embarrassed and frustrated. Someone who has it might have to explain the condition to others or deal with teasing or gawking.

    These tips can help kids with Tourette syndrome cope:

    • Get involved. Some experts say that when kids and teens are focused on an activity, their tics are milder and less frequent. Sports, exercise, or hobbies are great ways for kids to focus mental and physical energy.
    • Lend a helping hand. Dealing with Tourette syndrome often makes kids and teens more understanding of other people's feelings, especially other young people with problems. They might use that special sensitivity to volunteer. Knowing that they've helped others might help build confidence and ease any self-consciousness about feeling different.
    • Embrace creativity. Creative activities such as writing, painting, or making music help focus the mind on other things — and they help it develop.
    • Find support. The Tourette Syndrome Association sponsors support groups with others who understand the condition's challenges.
    • Take control. People with Tourette syndromecan feel more in control of their lives by researching the condition, asking their doctors plenty of questions, and taking an active role in their treatment.

    Each person with Tourette syndrome will cope differently with its physical, emotional, and social challenges. Tourette syndrome doesn't have to disrupt everyday life, though, and kids who have it can enjoy doingthe same thingsas other kids.

    Tourette Syndrome (for Parents) (2024)

    FAQs

    Is Tourette syndrome inherited from mother or father? ›

    It is an autosomal dominant disorder. This means that the gene for it is not on a sex (X or Y) chromosome. Only 1 copy of the gene needs to be present to pass it to a child. A parent with Tourette syndrome or the gene for it, has a 1 in 2 chance to pass the gene on to each of their children.

    What is the life expectancy for people with Tourette syndrome? ›

    TS is not a degenerative condition (one that continues to get worse) and individuals with TS have a normal life expectancy. If you have TS, you may experience simple or complex motor tics. They may range from very mild to severe, although most cases are mild.

    How to calm down Tourette syndrome? ›

    There are some simple things you can do that may help to improve your or your child's tics.
    1. avoid stress, anxiety and boredom – for example, try to find a relaxing and enjoyable activity to do (such as sport or a hobby). ...
    2. avoid becoming too tired – try to get a good night's sleep whenever possible.

    At what age does Tourette's start? ›

    Symptoms. The first signs of Tourette syndrome usually occur in children between the ages of 7 and 10, but they can begin as early as 2 years or as late as 18. Tics that begin after age 18 are not considered symptoms of Tourette syndrome.

    Who is most at risk for Tourette? ›

    Tourette syndrome is a type of neurological disorder characterised by involuntary tics and repetitive vocalisations. It commonly affects people between the ages of two and 21 years, with the majority of cases occurring in children aged four to 12 years. More boys than girls are affected.

    Does Tourette's get worse with age? ›

    There's no cure for Tourette's syndrome. Most children with tics do not need treatment for them. Tics can significantly improve or disappear altogether as patients move into their early 20s. However, some people find their tics continue or worsen in adulthood.

    Does Tourette's cause anger issues? ›

    Some people with TS have anger that is out of control, or episodes of "rage." Rage that happens repeatedly and is disproportionate to the situation that triggers it may be diagnosed as a mood disorder, like intermittent explosive disorder. Symptoms might include extreme verbal or physical aggression.

    Is it hard to date someone with Tourette's? ›

    Social Life with Tourette. Dating can be a challenge to all of us. While Tourette Syndrome may loom large in your mind, it might not be that big of an issue. There's really no reason why it shouldn't be just another thing to learn about you as you're getting to know each other.

    What triggers Tourette syndrome? ›

    The cause of Tourette's syndrome is unknown. It's thought to be linked to a part of the brain that helps regulate body movements.

    Can a child outgrow Tourette syndrome? ›

    And if a person is concentrating on controlling the tic, it may be hard to focus on anything else. This can make it hard for kids with Tourette syndrome to have a conversation or pay attention in class. The tics associated with Tourette syndrome tend to get milder or go away entirely as kids grow into adulthood.

    Why do tourette's make you say random things? ›

    As with other Tourette's syndrome tics, it's thought that coprolalia is a result of 'faulty wiring' in the brain, preventing normal inhibitory function. People with this tic are left unable to suppress unconscious thoughts.

    Is Tourette's inherited from mother or father? ›

    The inheritance pattern of Tourette syndrome is unclear. Although the features of this condition can cluster in families, many genetic and environmental factors are likely to be involved. Among family members of an affected person, it is difficult to predict who else may be at risk of developing the condition.

    What therapy is best for Tourette's? ›

    Behavioral therapy is a treatment that teaches people with TS ways to manage their tics. Behavioral therapy is not a cure for tics. However, it can help reduce the number of tics, the severity of tics, the impact of tics, or a combination of all of these.

    What is the new treatment for Tourette's? ›

    For young adults or adults with severe symptoms of Tourette disorder that are not adequately controlled with behavioral therapy or medication, an experimental new treatment called deep brain stimulation may offer some relief.

    What is the inheritance pattern for Tourette's syndrome? ›

    Most cases of Tourette disorder are caused by genes. It is an autosomal dominant disorder. Autosomal means that both boys and girls are affected. Dominant means that only 1 copy of the gene is needed to have the condition. A parent with TD or the gene for TD has a 1 in 2 chance to pass the gene on to each child.

    Do tics skip a generation? ›

    In some cases, tics may not be inherited; these cases are identified as "sporadic" Tourette syndrome (also known as tourettism) because a genetic link is missing.

    What race is Tourette syndrome most common in? ›

    The researchers found that the Tourette's rate in white children was about 4 per 1,000, while the rate for both blacks and Hispanics was about 1.5. The researchers looked at parental education and household income, and found those factors did not explain the racial difference.

    How is the family of a person with Tourette's affected? ›

    Family emotions and ever-present family dynamics will come into play. Parents may feel determined to forge ahead and build the best life possible for their children. Others may feel profound guilt, wondering what they did, or whether their genes caused their child to have TS.

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