When my child was diagnosed, I spent hours looking for information to better understand it. Below are notes I collected from different websites, other parents and doctors…
For many years, TS was considered to be a rare disorder, but tics and TS are now recognized as fairly common childhood-onset conditions.
There are a number of medical conditions that can produce tics or mimic Tourette’s:
- Sydenham’s Chorea
- Wilson’s Disease
- Tardive Dyskinesia
- Lesch-Neyhan Syndrome
- Cerebral Palsy
- Huntington’s Disease
- Postviral Encephalitis
- Stimulant medications such as methylphenidate hydrochloride (Ritalin) may also produce tics or unmask tics in some children
- Head injury
Depending on the patient’s history, the clinician’s observations, and the physical examination, the physician may order some tests to rule out some of these other conditions.
Tics are also seen in association with other conditions such as Asperger’s Disorder and Obsessive-Compulsive Disorder. If the tics are mild and infrequent, they may not warrant a separate diagnosis, but if the tics are problematic for the child, then they may warrant diagnosis and treatment.
Some intriguing but controversial studies suggest that in some cases, streptococcal (“strep”) infections may trigger an acute-onset of TS or Obsessive-Compulsive Disorder or may trigger a dramatic worsening of symptoms in individuals who already have TS and/or OCD. This is referred to as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections).
What do tics feel like?
Many individuals report a sensory basis for their tics — they feel the need to tic building up as a kind of tension in a particular anatomical location, and they feel that they consciously choose to release it. The sensations and internal events leading up to the expression of the tic are often referred to in the literature as “premonitory sensory phenomena.”
What happens if the individual tries to suppress the tics?
Some individuals have no control at all over their tics, while others have varying degrees of control. Most adults report that their ability to modify or suppress their tics improved as they matured, and recent research supports the notion that as the child matures, their awareness of their tics and their ability to suppress them increase.
Children shouldn’t suppress their tics… With young children, it is important to remember that the child may not be aware of their tics, and even if they are aware, they may have no ability to suppress them. Asking a young child who has tics to suppress them is generally not a good idea because: the effort involved in suppressing the tics will distract the child from whatever else is going on, and the effort spent in suppressing tics is stressful and can produce fatigue and/or irritability, and when the tics are eventually released, they may be more explosive. People with TS often report a substantial buildup in tension and anxiety. It is a common phenomenon that children or adolescents who try to suppress their tics in school all day will come home from school, walk in the door, and explode in tics — often accompanied by a lot of emotional behaviors.
What does a tic look like? The first tics are usually simple motor tics of the head, face, neck, and shoulder region or simple phonic tics. Eye blinking is the most common but it is important to remember that having this tic does not necessarily indicate that the child will develop Tourette’s.
What is Tourette’s Syndrome? TS appears to be familial in most cases, suggesting a genetic component. It appears that there is likely to be a significant genetic factor, although prenatal, perinatal, autoimmune, and environmental factors can affect or modulate the severity of symptoms. Boys are significantly more likely to develop TS than are girls. The average age of onset of TS is 6 – 7 years old
The first tics are often erroneously thought to be “nervous habits” or unexplained colds. For example, a child who suddenly starts sniffing may be thought to have a cold. Similarly, a child who suddenly starts blinking their eyes a lot may be thought to have some vision problem, but on examination, there will be no evidence to support it.
In the first years after tics first emerge, many people report that the waxing periods tend to worsen from one waxing cycle to the next. The child may experience more tics and/or more severe tics over time, and there seems to be a tendency for things to get worse before they get better. The good news is that for many individuals, the tics will ease up significantly or go into remission in the teen years.
While stress does not cause TS, it would seem almost intuitively obvious that stressors might make the symptoms worse for at least some individuals with tics.
Parents should understand that a child with TS has an illness. His or her nervous system is hypersensitive or hyper-excitable, and it needs to be thought of in these terms. Tourettes is a chronic condition and its symptoms can last a lifetime. The worst time for those suffering from Tourettes is in their early teens when TIC activity reaches its height.
Treatment… Since it is very common for someone with Tourettes Syndrome to have co-existing conditions such as Attention Deficit Disorder and ADHD, personalized treatment plans must be developed based on individual symptoms.
Habit reversal therapy is the most used behavioral therapy to treat Tourette syndrome. There are two parts to habit reversal – awareness training and competing response training. In the course of habit reversal the person says what tic is currently happening, such as raising their arm. When the tic occurs, the patient verbally states what is happening and his/her therapist will give him a counter response to perform at the time the tic is occurring.
Comprehensive Behavioral Intervention or CBIT is a fairly new and effective behavioral therapy that encompasses habit reversal, behavior therapy, relaxation methods and parental instructions.
Sudden, brief and repetitive. Usually involves only a few muscle groups.
- Eye Blinking
- Head Jerking
- Shoulder Shrugging
- Finger Flexing
- Throat Clearing
- Grunting Sounds
Distinct and coordinated patterns of movements. May involve a system of muscle groups.
Complex tics include repetitive words and phrases whereas simple tics are just a light gabbling of noise.
- Smelling or Touching objects
- Flapping the arms
- Touching or rubbing the nose
- Using different tone or voice