What is Tourette Syndrome and Other Tic Disorders?
Tourette syndrome, also known as Tourette disorder in newer mental health guides, is a common disorder that affects the normal growth and development of the brain, impacting up to 1% of all people. The disorder causes people, usually children, to have multiple physical (motor) and vocal tics that they can’t control. Children with this disorder can sometimes feel physical pain, feel lonely or upset, and struggle in school or other areas.
It can be hard to tell whether these experiences happen because of the tics or because of other mental health conditions that often occur alongside Tourette syndrome. These can include attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety disorder, or oppositional defiant disorder (ODD). Even though lots of research has been done, scientists and doctors still aren’t sure why Tourette Syndrome develops or how genetics might play a role.
Medical treatment isn’t usually needed, because children often see improvements from a type of therapy that helps to manage tics (called comprehensive behavioral intervention for tics, or CBIT). Educating teachers and family members about Tourette Syndrome can also help improve the child’s social experiences. Each child’s experience with Tourette syndrome can be different. While the tics usually go away by adulthood, the other mental health conditions can continue.
What Causes Tourette Syndrome and Other Tic Disorders?
Georges Gilles de la Tourette, who first documented the syndrome that bears his name, pointed out that it tends to run in families. Since then, research has shown that more than half the children diagnosed with Tourette Syndrome (TS) have a family history of the same condition. Moreover, these children are ten times more likely to have a close relative with TS compared to the general population. Notably, in twins that come from the same egg (monozygotic), the condition is five times more common compared to twins from two separate eggs (dizygotic).
Tourette Syndrome is considered one of the most genetically passed down disorders affecting the brain, especially related to mental and behavioral conditions. However, it does not follow a straightforward pattern of inheritance (non-Mendelian) and scientists are yet to pinpoint a single gene responsible for it.
It appears that TS is influenced by many genes (polygenic) and also by one’s environment. This mix can create different symptoms in different individuals (ideographic phenotype). Some research has indicated that certain gene abnormalities can disrupt specific brain circuits which may contribute to the symptoms seen in TS. Additionally, there are also environmental factors like infections, the body’s immune response, or birth complications that may play a role.
Risk Factors and Frequency for Tourette Syndrome and Other Tic Disorders
Tourette syndrome is a condition that has been the center of many studies over the past 30 years. Different approaches taken by various studies have resulted in varied findings on how common it is. The incidence in children is found to range between 3 in every 1,000 to 8 in every 1,000. Boys are more likely to have this condition, with the male to female ratio varying from 3:1 to 4:1.
- Various studies conducted over the last 30 years have found that Tourette syndrome is prevalent in between 3 and 8 out of every 1,000 children.
- Tourette syndrome is more common in boys than in girls, with a ratio of 3:1 to 4:1.
- According to the CDC, white children in the United States are twice as likely to have Tourette syndrome compared to Hispanic or African-American children.
- However, it’s possible this data could be skewed due to differences in healthcare access among these groups.
Signs and Symptoms of Tourette Syndrome and Other Tic Disorders
Tourette Syndrome, often referred to as GTS, is a disorder that results in recurring motor and vocal tics. Motor tics are sudden, repeated, non-rhythmic movements that often feel like an urge. Common areas affected by these tics are the face, head, and neck. Vocal tics, on the other hand, make noise. These can include sniffing, grunting, humming, clicking, and repetitive yelling of words. Less than 10% of GTS patients have coprolalia, a tic that causes them to shout inappropriate words.
To diagnose Tourette Syndrome, doctors use the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5). The criteria include:
- Multiple motor tics and at least one vocal tic have been present at some point during the illness, though not necessarily at the same time
- The tics may come and go, but have been present for more than one year since the first tic appeared
- The tics began before age 18
- The tics are not due to substances or another medical condition
It’s important to note that some individuals may only have motor tics or vocal tics, but not both. This is recognized as a separate diagnosis known as persistent (chronic) motor or vocal tic disorder. Additionally, if the tics have not lasted longer than a year, the diagnosis is known as provisional tic disorder.
Tics typically start between ages 4 to 6, with symptoms peaking around 10 to 12 years. Simple motor tics are usually diagnosed early, while complex tics tend to develop later. The individual tics start quickly and happen multiple times daily, getting worse over the next few days to weeks. The length of time the tics stay at this level varies from weeks to years before they slowly decrease.
Most patients experience an urge before the tic, then feel relief once it has been carried out. This can be described as a need to perform the movement, followed by a sense of satisfaction. About 20% of patients might feel a physical sensation, like itching or tingling, along with the urge. Trying to stop these tics can cause anxiety and is often energy-draining. This is because the urge intensifies, and some patients report losing control over their tics if they try to suppress them.
It’s also common for children with Tourette Syndrome to have other disorders like ADHD or OCD. These can cause anxiety, sleep problems, low impulse control, and other behavioral issues. Sometimes, the impact of these combined disorders is greater than the severity of the tics themselves.
More than half of children with GTS also display an echophenomenon, which means they may repeat words (echolalia) or movements (echopraxia) they observe. This is especially common in those who also have OCD. This can sometimes cause problems when interacting with authority figures, such as teachers or police officers, who may not understand the condition.
Testing for Tourette Syndrome and Other Tic Disorders
For diagnosing a condition like Tourette Syndrome, a thorough discussion about the symptoms and a physical examination by an experienced doctor is usually enough. The only unusual findings during a neurological examination would be the motor or vocal tics, which are sudden, repetitive movements or sounds. Other signs might suggest a different condition. This could include changes in the child’s thinking process, tics that arise while the child is sleeping, or constant movement.
One common tool for evaluation is the Yale Global Tic Severity Scale. This is often used in studies about Tourette Syndrome and can also be used in clinics. It’s important for the doctor to also check for other conditions like ADHD (Attention Deficit Hyperactivity Disorder), OCD (Obsessive-Compulsive Disorder), anxiety disorder, or behavioral problems. These conditions can sometimes occur alongside Tourette Syndrome and can seriously affect the child’s social life. Treating these conditions can indirectly decrease the number and intensity of the tics.
At present, there’s no specific blood test or genetic test for diagnosing Tourette Syndrome. Brain scans like MRI or CT scan are usually normal. Some recent MRI studies have shown small decreases in the size of an area in the brain, called the caudate, in patients with Tourette Syndrome, and this decrease in size might relate to OCD symptoms. But these results came from very precise measurements, and these techniques are not currently widely available.
Even though children may appear to control their tics well in school or social settings, they might be using a considerable amount of mental effort to do so. This can affect their ability to focus on schoolwork or engage in conversations. By asking questions about this aspect, the doctors can gain a clearer understanding of how much the Tourette Syndrome is interfering with the patient’s daily life.
Treatment Options for Tourette Syndrome and Other Tic Disorders
Families often seek medical consultation when their children exhibit signs of mild Gilles de la Tourette Syndrome (GTS). They do this primarily due to worries that the tics, a common symptom of GTS, might be caused by another disorder. So, understanding the family’s concerns, and confirming a diagnosis of GTS, can often provide much-needed comfort.
After the diagnosis, it’s essential to inform the child and family what GTS is – primarily, that it’s a condition characterized by unexpected motor movements and vocal outbursts (tics). It’s also vital to provide information about any other related conditions, coping strategies, possible outcomes, and prospective treatments. As GTS tends to run in families, and anxiety and obsessive-compulsive disorder (OCD) are often common in the same households, these discussions may sometimes be challenging and may require extra care and support.
Parents are usually worried about the social impact GTS can have on their child. GTS’s impact on children has been studied extensively, and there are strategies available to improve a child’s quality of life. Supportive teachers can significantly improve a child’s experience of GTS. But if teachers or students don’t understand the condition and the child’s inability to control tics, this can create problems. Sharing educational material with teachers and conducting short presentations on tics to students can significantly reduce bullying and improve the social experience for the child with GTS. Setting clear and achievable goals is important for a child’s treatment.
Often, the behavioral disorders associated with GTS, like OCD or ADHD, can be more challenging for the child than the tics themselves. Comprehensive evaluations are necessary to understand whether the child suffers from such conditions. This helps to develop a treatment plan that’s tailored to the child’s needs, as different conditions require varied approaches.
If the child’s quality of life is significantly affected – for example, by pain from tics, difficulty in performing motor tasks, trouble sleeping due to frequent movement, social isolation, or risk of mood disorders – then behavior therapy and/or medication may be considered. In general, behavior therapy should be the first treatment option due to potential side effects from medications.
Behavior-based therapies such as Habit-reversal training (HRT) help patients to recognize and manage their tics. The therapist guides the patient to use alternative actions that are incompatible with the tics whenever they feel the urge to tic. This therapy has proven effective, with a majority of children maintaining control of their tics after six months.
In more severe cases, medications to control the symptoms of GTS are considered. Guanfacine, clonidine, and antipsychotic medications are commonly used. However, all these medications can have side effects and must be used with caution. For instance, sleepiness is a frequent side effect of such medications.
For cases that do not respond to these treatments, other options are available. Injections of botulinum toxin may be useful for particularly disruptive or painful motor tics. In rare, severe cases, a procedure known as deep brain stimulation is considered. However, this should be approached cautiously since it’s unclear what age is appropriate for implanting the device.
What else can Tourette Syndrome and Other Tic Disorders be?
Childhood absence epilepsy or seizures often start at the same age as motor tics do. Because a child’s first motor tic involves eye blinking, it can be challenging to differentiate between the two. Unlike absence seizures, motor tics don’t involve altered consciousness or staring, and they usually last a shorter time. Anxiety doesn’t usually heighten seizures. EEG, an electrical brain scan, isn’t usually recommended for children with motor tics unless there’s a concern for altered consciousness. The EEG should be able to distinguish between the two conditions if necessary.
Motor stereotypies are another neurological phenomenon that can be mistaken for motor tics. These involve repetitive movements that seem to have no purpose, like flapping or waving arms, hand flapping, head nodding, and rocking back and forth. Unlike motor tics, stereotypies typically begin before age 3 and the child tends to have only one type of repetitive movement. They can control these movements more easily and the frequency decreases considerably by the time the child reaches elementary school.
Chorea is another condition that is characterized by jerky, involuntary movements, particularly in the shoulders, hips, and face. However, these movements are more consistent compared to motor tics and are less common in children.
Paroxysmal Dyskinesias (PDK) involves sudden abnormal movements often triggered by an abrupt movement or scare. PDK attacks usually last only for a few seconds or minutes but may be preceded by an unusual sensation in the limbs. This condition is usually inherited, in which case it follows an autosomal dominant pattern, but it can also occur randomly (sporadically).
Akathisia, a movement disorder resulting in a feeling of inner restlessness and inability to stay still, is frequently a side effect of certain medications, such as antipsychotic, antidepressant, or antiemetic drugs. Although it typically occurs in adults, it’s also being seen increasingly in children as these medications are being used more and more.
Differentiating motor tics from the repetitive movements of Obsessive-Compulsive Disorder (OCD) can be quite difficult, often because there is a lot of overlap between these two conditions. Movements in OCD are performed to relieve intense anxiety and often come with compulsive thoughts. In contrast, motor tics usually follow a vague urge that’s not as well-defined and are more subconscious. Despite this difference, the treatment approach for these movements are similar, so it’s not always necessary to distinguish between the two.
What to expect with Tourette Syndrome and Other Tic Disorders
In simple terms, the general idea about the progress of Gilles de la Tourette syndrome (GTS) that doctors give to families and patients is that one-third of people with the condition will fully recover, one-third will see improvements, and another third will continue to experience symptoms without any lessening. GTS is characterized by involuntary muscle movements and vocal sounds, also known as tics.
In addition, it has been noticed that tics seem to decrease during the teenage years, as shown in a specific study that reported this decrease every year within this age group.
As for the ‘third’ that continues to face challenges with GTS into their adult years, it is believed that they are likely to also struggle with associated mental health disorders. For example, Attention Deficit Hyperactivity disorder (ADH) or Obsessive-Compulsive Disorder (OCD) are often seen in these patients.
Possible Complications When Diagnosed with Tourette Syndrome and Other Tic Disorders
Tourette Syndrome can lead to both behavioral and social issues. It can cause feelings of embarrassment and shame. It has also been linked to an increased risk of anxiety disorders, disruptive behaviors, mood disorders, learning disabilities, and sleep disorders.
In severe cases, the mood disturbances caused by Tourette Syndrome might even lead to thoughts of suicide.
Possible Complications:
- Behavioral issues
- Social issues
- Feelings of embarrassment and shame
- Anxiety disorders
- Disruptive behaviors
- Mood disorders
- Learning disabilities
- Sleep disorders
- Potential thoughts of suicide
Preventing Tourette Syndrome and Other Tic Disorders
It’s extremely important to educate both the patient and their family when dealing with Tourette syndrome. Tics, or sudden, rapid movements or sounds that people with Tourette make, can negatively impact a person’s social development. So, it is crucial for parents and teachers to be aware and supportive. Current advice suggests starting with something called habit reversal training with CBIT before considering any medicine. CBIT is a type of therapy that teaches the individual how to manage tics.
If CBIT isn’t available, or doesn’t work effectively, then medications might be needed. Such medicines may include tetrabenazine, risperidone, fluphenazine, or clonidine. Additionally, dealing with any other accompanying mental health issues can also aid in reducing the overall negative effects of the condition.
