Tourette Syndrome (TS) is an inherited neurological disorder generally associated with tics. Tics are defined as either involuntary body movements, or involuntary vocal sounds that are usually repetitive. The occurrence of TS in children is about 1 of every 2000 children, with an increased occurrence in boys as opposed to girls. The syndrome itself is named for the French neurologist Dr. George Gilles de la Tourette, who diagnosed the first patient with the illness in 1885.
How do you know if you have it? (Symptoms and Diagnosis)
Diagnosis specifics vary from one source of information to the next. Some publications, such as the website for the Jim Eisenreich Foundation for Children, suggest waiting until the tics are present for at least one year, and that multiple tics must be shown - vocal and physical (though not at the same time). Other sites claim that the tics usually don't really surface until the children are around five or six years old, but always before they are twenty-one. The occurrence of TS is increased if the child has a parent or sibling with TS. In many instances, the tics seem to disappear completely when the patient is in his or her twenties, but some patients are forced to live with TS for the rest of their lives. TS is often misdiagnosed because so little is really known about the disease. It is a clinical disease, meaning that there are no blood tests that can be done to prove that someone has it. The uncertainty surrounding the disease causes a lot of children with TS to have a hard struggle at school, with personal relationships, and can cause them to become the target of ridicule. Children, of course, are scared of what they don't understand, and TS is not something that has always been openly talked about. Some of the preconceived notions about people with TS are ridiculous - even that they are demon possessed and that is why they scream out obscenities! In truth, the act of screaming out obscenities (coprolalia) occurs less than 15% of the time in those with TS. The media coverage of TS just seems to highlight the cases in which the children repeat things that are inappropriate.
One specific research study focused on the occurrence of TS associated tics in primary school children. This study was published in the Journal of the American Academy of Child and Adolescent Psychiatry. The same doctor saw a general population of primary school aged children in Sweden in a clinical setting. The findings regarding rates of occurrence were alarming - for boys, the rate of occurrence was 1.7% with girls being about 0.5%. Overall the rate was 1.1% for their general population sample. The ratio of TS occurrence in boys vs. girls was anywhere from 4:1 to 6:1. The rate of comorbid conditions (conditions that accompany the initial disorder) was very high in this sample group. About 64% suffered from ADD (ADHD), 47% from coprolalia or inappropriate sexual behavior, 36% had some sort of learning disability (dyslexia, for example), 17% had undefined behavioral problems and 24% had development / coordination problems.
The researchers were also able to speak with the teachers of these students, which gave some insight on the types of other difficulties these children were faced with. For example, 21% were commonly involved in conflicts with other students. A mere 14% had reported no interaction problems. A lot of the students were also described as seemingly having one or no friends at all, though the doctors did not actually present any percentage information on this because of the actual reliability of the information.(Bjorn, 552)
The tics are usually mild in severity though some can be severe and all are completely uncontrollable.
Tics can either be simple or complex. "Simple tics are sudden, brief movements that involve a limited number of muscle groups," while complex tics can be described as "distinct, coordinated patterns of successive movements involving several muscle groups." (Whitley) Some examples of simple tics are eye-blinking, movement of shoulders (like shrugging), facial contortion, barking, etc. Complex tics can include touching facial features (nose, eyelids), touching people around you, jumping, and smelling things.
There are current studies that are researching the actual basis for TS, but no known cause has been determined as of yet. At this time, researchers seem to think that the problem lies within the brain's metabolism of chemicals that are responsible for carrying signals between brain cells - commonly known as neurotransmitters.
Section Two: How do you treat TS?
The treatment for TS varies depending on the severity of the tics, and whether or not they actually interfere with the patient's daily routine. For the most part, there are no medicines that can stop the tics, only reduce their occurrences. The medicines tend to have rather severe side effects that can outweigh the benefits. Without getting too technical with medical terminology, some of the medicines (listed on the website for Tourette Syndrome Association, Inc.) that can be used to control the severity of the tics are:
Prolixin or Permitil (fluphenazine)
These are all strong drugs, and have major side effects that prevent most children with TS from using them. Some of the side effects are weight gain, fatigue, drooling, loss of control over facial muscles, and restlessness. Doctors have to closely regulate the dosage, too, in order to obtain a balance between the side effects and the tics. Anti-depressants (Prozac, Paxil, Zoloft) can be prescribed if the child is hurting himself, hurting others or suffering from obsessive-compulsive disorders, but again, these are adult drugs with side effects that really take their toll. It is obvious why so many patients and parents feel that pharmaceuticals are not the best answer to TS.
Craig Whitley (author of Tourette-Syndrome.com) whose own seventeen-year-old son has been suffering from TS since he was eight, explains that symptoms usually begin to surface at around the average age of six years old, and disappear around twenty-one years of age. Mr. Whitley's website is sort of an online directory of support for parents of children suffering from TS, as well as for the children themselves. He explains how one of the more devastating facts about TS is that there are many "companion" behavior conditions - such as ADD, obsessive-compulsive disorders, insomnia and often times aggression as a release for frustration. Often times it is the decision of the parents and physician regarding which condition is the worst, and which ones must me treated medically. "The wide range of...symptoms that can accompany tics may, in fact, be more disabling than the tics themselves. Patients, families, and physicians need to determine which set of symptoms is the most disabling so that appropriate medications and therapies can be selected." (Whitley) It is hard to imagine trying to deal with TS alone, not to mention having the complications of another condition heaped on top of that.
Section Three: What is being done to cure TS?
The most exciting and promising part of TS is the amount of research that is being done in the hopes of finding not just a cure, but better treatments for those who continue to suffer. Craig Whitley's site highlights some of the research being done by the National Institute of Neurological Disorders and Stroke, the leading contributor to TS research nationally. The recent studies have determined that TS is an inherited trait from a dominant gene that causes different symptoms to appear in different people. The disorder may turn out to be more common than was previously thought. Genetic studies are trying to find the chromosomal link to TS, so that new therapies can become an option for research and development. Once the marker is found, the research can focus on finding the gene, which can lead to a better determination of risks for people who carry the gene, gene therapy when couples are preparing to have children and perhaps a more definite diagnosis technique.
Section Four: Living with TS
Living with TS is not exactly easy for those who are improperly diagnosed. Parents can be told that they are causing their child to have tics. Children are scolded by teachers for not behaving when they have almost no control over what they are doing. Despite the early discovery of the symptoms of TS by Dr. Tourette, TS is not widely publicized, talked about or even medically understood. Some doctors misdiagnose, causing even more trauma in the child's life. For the most part, outgoing children can overcome any stigma that might be attached to them, but it is the knowing of information that is the most important factor. Teachers, students, friends, siblings, and parents all need to be informed as to what a child is facing and experiencing. Perhaps the most important thing is that TS cannot be fixed, but life can be rewarding, and fulfilling. A cure is out there for someone to discover.