In Learning Disabilities, Physical & Mental Health

Living with Tourette Syndrome

Defining Tourette Syndrome

Named for the French neurologist, Dr. Georges Gilles de la Tourette, this neurodevelopmental disorder causes people to act or speak involuntarily and affects approximately 1 in 100 Americans. Research supports, but does not confirm, that abnormalities in more than one area of the brain contribute to this condition. The theory states that areas of the brain, the connectors to them, and neurotransmitters fail collectively. One genetic mutation has been identified as proof that Tourette’s may be inherited.

The brain is a complex organ and it stands to reason that any disorder connected to it would be complex as well. Though it is not associated with any particular ethnic group, it does affect significantly more men than women, about 3:1. There is no cure, but It is not contagious, it is not life-threatening, and it can be endured to live a healthy, happy life.

The A-B-Cs of T-I-Cs

Sufferers exhibit involuntary physical movements (motor) and/or vocal expressions known as tics. These movements and/or expressions, more than likely, are preceded by some sort of discomfort (itch, tingling sensation, or the like) that performing the tic will alleviate. This is known as a premonitory urge. For some people, with tremendous effort, this urge can serve as a warning that allows them to momentarily suppress the tic and cause less disruption in a situation. Even in the best of circumstances, this suppression lends to a substantial building of the uncomfortable premonitory urge and the tic may become completely uncontrollable.

Typical characteristics of motor and vocal tics:

  • become worse when sufferer experiences anxiety, stress, fatigue, or agitation
  • change in severity, type, and/or frequency
  • happen while sleeping

Motor Tics of Tourette Syndrome

Simple

  • brief, sudden, and repetitive
  • involve limited number of muscle groups
  • sticking out the tongue, shoulder shrugging, eye blinking, finger flexing, head jerking

Complex

  • more distinct and prominent, may seem purposeful
  • movements correlate several muscle groups
  • hopping, smelling objects, touching nose, obscene gestures, touching objects or other people

Vocal Tics of Tourette Syndrome

Simple

  • clearing of the throat
  • barking
  • yelling
  • hiccuping

Complex

  • variance in tone of voice
  • use of profane or vulgar words
  • repetition of words or phrases
  • repetition of other’s words or phrases

Tics may also be triggered by exposure to similar behavior in another person. For example, a sufferer who smells objects or clears his or her throat may be triggered to do so once observing someone else smell an object or clear his or her throat.

Associated Disorders

Tics are almost always associated with other disorders that contribute to Tourette’s. This may be due to the interconnection of brain disorders.

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Difficulties with basic learning (reading, writing, arithmetic)
  • Obsessive Compulsive Disorder (OCD)-may contribute to the type of tics a sufferer may exhibit as a means of control (repetition of movement or sound made a certain number of times or ritualistic actions)
  • Anxiety and/or depression
  • Sleep disorders

Diagnosing Tourette’s

  • Purposeful tics may be mistaken for other ailments. (blinking with vision disorders and sniffing with sinus or allergies).
  • The most common indicator is the consistent presence of motor and vocal tics several times a day occurring for over at least a year. If intermittent, the break must not exceed three months.
  • Tics must develop before 18 years of age.
  • Tics cannot be attributed to medication.
  • Evidence of correlating conditions mentioned in previous section also assist in diagnosis.
  • There are no laboratory tests that can be used for diagnosis because there is no measure that can be compared to a standard like blood or urine testing can be measured.
  • Laboratory tests can be used to rule out conditions that may be mistaken for Tourette’s.

Treatment of Tourette’s

Medication is rarely used as Tourette’s is not an impairing disorder, but they are dispensed for tics that impede functionality.

  • Antidepressants-fluoxetine-counter anxiety, obsessive/compulsive tendencies, and feelings of sadness
  • Botox injections-for simple or vocal tics-injected into muscle of afflicted area to relieve tic
  • Central adrenergic inhibitors-clonidine or guanfacine- counter rage attacks and lack of impulse control-may cause drowsiness
  • Neurotransmitter blockers-drugs like haloperidol and fluphenazine control neurotransmitters in the brain-may affect sharpness of the mind and cause weight gain
  • Stimulants-Ritalin, for example, to increase ability to suppress tics
  • Therapy
    • Behavior therapy-habitat-reversal training-tics are monitored and premonitory urges are identified-the body is conditioned to voluntarily respond to urges that oppose the involuntary tic
    • Deep brain stimulation-last resort due to not response to other treatments-neurostimulators are implanted in the brain-areas of the brain are targeted for electrical stimulation to control movement
    • Psychotherapy-provide coping skills for associated conditions (ADHD, OCD, anxiety, and depression

Tourette Syndrome in Children

  • According to the Mayo Clinic, symptoms manifest between the ages of 2 and 12, statistically around 7 years of age.
  • Motor tics usually manifest before vocal tics.
  • Symptoms initially occur mostly in the head and neck regions, and may advance to other parts of the body.
  • Simple tics may develop into complex tics.
  • Puberty and maturation may affect the sufferer as many experience an abatement of symptoms at the end of this stage of development.

Coping with Your Child’s Condition

  • Be aware of and support your child’s interests and relationships.
  • Educate yourself, your child, and others. Once they understand what you understand, then acceptance can begin.
  • It is easier to control your neck of the woods instead of the entire world. Network with other families with similar issues. Start a support group if there are none to join.

Tourette Syndrome at School and Bullying

  • Section 504, Title II of the Disabilities Education Act dictates that your child is protected from verbal and physical harassment.
  • Make sure that your child is placed in a classroom setting that accommodates his or her individual situation. Section 504 also dictates allowances be made in consideration for your child’s way of learning, if it is outside of the standard (extra time for assignments, test-taking techniques, private study area, tutoring, etc).
  • Many tics are misinterpreted as purposeful misbehavior or aggression. Educate the people with whom your child interacts. If knowing is half the battle, then fight back with information that will help others to help your child. Diminish the bully’s audience and increase your child’s advocacy among teachers and students.
  • Feed your child’s strengths. Increase morale by boosting self-esteem. Teach your child to have faith in him or herself.

Tourette’s sufferers like Tim Howard and Jaylen Arnold are a part of the solution for others afflicted with this condition. Howard is the goalie for the 2014 US soccer team and he helps on two fronts: 1) he serves as a role model for other people with Tourette’s and, 2) he brings a sense of normalcy to the public opinion by demonstrating how a person with Tourette’s actually looks and sounds. Jaylen Arnold is a boy who took it upon himself to educate his teasers and bullies. In the process, he has gained new friends and supporters of his cause, which is to stop all forms of bullying. It can work if you set it in motion.

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