Tourette's Syndrome

There is a lot that can be said about Tourette's Syndrome, and a lot we still don't know about it. To provide a relatively simple explanation, Tourette's is a neurological disorder mainly known for the sudden, involuntary movements or sounds it produces. These movements and sounds are called "tics", and they tend to be sudden, brief, and occur without the individual's choice. There are other tic disorders called "transient" and "chronic/persistent." The main thing that sets them apart from Tourette's is the number of tics and how long the child has tics.

Early identification of Tourette's can be helpful and may reduce the impact that Tourette's and its related conditions (such as ADHD and OCD) may have on a child. Many individuals with Tourette's see their symptoms improve as they enter adulthood and some may exhibit no tics later in life. The severity of tics can vary a great deal as well: ranging from minor and hard to notice, to medically concerning (meaning they produce injury). The information here is intended to help you determine if your child should be evaluated for Tourette's, and to help you understand Tourette's a little better.

Does my child have Tourette's?
If your child has exhibited tics for at least 1 year, without a long period completely free from tics (meaning more than 3 months), then it would be considered a chronic condition, and may be Tourette's. Tics may come and go during that 1 year period, and they may change (for example, one tic stops and another begins). When describing changing tics, parents have often told me that the tics seemed to "move" from one place to another. If your child meets these criteria, then it may be a good idea to get an evaluation.

Also understand that many children develop temporary tics as they grow. These tics may come and go within a matter of weeks and never reappear. With Tourette's, it is common for a tic to appear and then vanish, but it will usually reappear within a couple of months.

To understand more about what "tics" are and what they may look like, read the information below.

What are motor and verbal/vocal tics? 
Tourette's requires that the child has motor and verbal/vocal tics. We also describe tics as "simple" or "complex." Simple tics are brief, single actions whereas complex tics are a series of actions. Complex tics can look more like compulsive behaviors that you might think of with Obsessive-Compulsive Disorder.

Motor tics are relatively easy to see and identify. They are movements of the body and range from simple movements (like eye-blinking or rubbing finger tips together) to complex movements (like a deep knee-bend, followed by standing up, turning in a circle, and clapping). Motor tics may appear to be completely normal movements, but occur at times when it doesn't make sense or more often than appears necessary. Some simple motor tics can also be concealed easily, making them harder to spot if your child doesn't want it to be seen.

Verbal/vocal tics are typically sounds or movements of the mouth, nose, tongue, throat, or breathing passage (including the diaphragm). The distinction between vocal and motor tics is in some ways artificial, but vocal tics basically include actions involving the body parts used for talking and breathing. Some common simple vocal tics are sniffing, coughing, grunting, or moving the nose or mouth. More complex vocal tics might include saying specific phrases.

This is probably a good time to address a common myth and misunderstanding about Tourette's: profanity. Compulsive swearing is called "coprolalia" and it is certainly a real attention-drawing behavior, but it is actually very rare. A minority of individuals with Tourette's (less than 10%) have coprolalia, but the media (movies, TV shows, etc.) have latched onto it because it is something that you would immediately notice if it happened.

Following is a list of common motor and vocal tics. It is not a complete list, there are many others, but it can be a helpful guide:

Common Motor Tics:
Eye blinking
Eye rolling / darting
Head jerk
Facial grimace
Mouth/tongue movements
Shoulder shrugs
Chest/stomach tightening
Pelvic tensing movements
Leg/feet movements
Arm/hand movements (such as rubbing, flicking)
Echopraxia (copying another’s gestures)
Copropraxia (obscene gestures)
Complex motor combinations (multiple tics at once)

Common Vocal Tics:
Grunting
Sniffing
Snorting
Coughing
Animal noises
Syllables
Words
Phrases
Echolalia (repeating vocalizations of others)
Coprolalia (obscene words)
Blocking/stuttering
Complex vocal combinations (multiple tics at once)


What causes Tourette's?
There is no known cause for Tourette's. There appears to be a genetic component that increases the likelihood of an individual developing Tourette's. It is estimated that there is a 50% chance that the genes responsible for Tourette's will be passed on to an individual's children. That does not guarantee that the child will develop Tourette's though. The genetic characteristics also appear to be linked with Attention-Deficit/Hyperactivity Disorder (ADHD) and Obsessive-Compulsive Disorder (OCD), because individuals with Tourette's have higher rates of ADHD and OCD. However, not everyone with Tourette's will have ADHD or OCD. Children who receive the gene may develop obsessive-compulsive behaviors (not necessarily full OCD) or milder tic behaviors. Females appear more likely to develop obsessive-compulsive behaviors and males appear more likely to develop tics.

In the above paragraph, I mentioned that there is a 50% chance that a child will inherit the genes for Tourette's, but not actually develop it. It can be difficult to understand how a child may have the genes involved in developing Tourette's, but does not actually have Tourette's. Though this explanation is oversimplifying things, a child may have the genes (the basic materials) for Tourette's, but does not have experiences (which include activities, foods, illness, environmental factors...) that cause the genes to activate and the child to develop Tourette's.

There has been some speculation that childhood illness and the immune response may contribute to the development of tics or Tourette's or its severity. Some children begin to show tics after recovering from an illness such as strep throat. This notion is referred to as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections(or PANDAS). It is an interesting possibility, but is still not fully confirmed or understood at this time.

Can Tourette's be cured or treated?
There is no cure for Tourette's at this time; however, there are many treatment options available. Older treatment strategies involved the use of medications (such as haloperidol), but the side-effects associated with the older medications were fairly strong and undesirable. Therefore, medication was typically advised in more severe cases. These days there are other, milder medications to help alleviate tics, behavioral intervention for tics, and experimental surgical treatment.

Medications available for Tourette's still include substances such as haloperidol, but now milder options are available now such as Tenex or Clonidine. These medications tend to produce a degree of drowsiness in children (they were originally intended to help lower blood pressure), but have been found to have some benefit in reducing the severity of tics. The side-effects must be carefully monitored, however, and may prove to be undesirable. Medication should only be used as prescribed by your child's physician and it is important to remain in close contact as you figure out what works for your child. If you do not like the side-effects of a medication, speak with your child's physician first about the side-effects, and learn about how to stop using the medication if that is the route you are taking (some medications can be very dangerous if suddenly stopped).

Experimental surgical treatment for Tourette's is currently under development, and may be beneficial in extremely severe cases. The process involves surgically implanting an electrode in the individual's brain at a particular point involved in the tic behaviors. The electrode can then be activated to disrupt the typical brain activity that produces tics. This procedure is still unproven, the side-effects are not fully known, and the long-term benefits are unclear. However, it may provide a valuable method for addressing extremely severe tics.

Behavioral intervention for tics may be the best approach for children with mild-to-moderate tic severity. The procedure known as "Comprehensive Behavioral Intervention for Tics" (or CBIT) has been developed by researchers associated with the Tourette's Syndrome Association and the Centers for Disease Control. It involves a series of planned sessions (typically about 12 sessions) with a specially-trained therapist to help the child build awareness of tics, the urge that occurs before the tic, and the ability to engage in a different behavior that is incompatible with the tic. For example, a child cannot engage in an arm-flicking tic if his arms are crossed. The procedure has been shown to be very effective in reducing the severity and frequency of tics for individuals with Tourette's. However, the procedure may not work for everyone or may need to be applied in combination with other treatment options for more severe tics. Perhaps one of the greatest advantages to behavior intervention is that there are no known side-effects and it increases the knowledge of both the child and parent.

Additional information may be found at the following sites:
http://www.tsa-usa.org
http://www.cdc.gov/ncbddd/tourette/treatments.html
http://www.tourettesyndrome.net/
http://www.tsplusblog.com/

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