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Tourette's Syndrome
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| Wednesday, May 20th, 2009 | | CWK Producer |
“And it’s not a progressive illness ... you have the odds stacked in your favor.”
– Jorge Juncos, M.D., Neurologist
What is it like to live with Tourette’s Syndrome? Marc Elliott can tell you. He’s been living with Tourette’s since he was 6 years old. “After a long day, you’re just so exhausted from constantly shaking or ticking or jerking, and so it takes a lot out of you. “
Bill Elliott, Marc’s father, says his son has endured a lot. “As parents we hurt for Marc because we felt the pain he was going to have to go through, and it was hard for us emotionally to deal with it. It was very sad.”
There are medications, but there’s no cure. And stress can make the condition worse. Over time, it can destroy a child’s self-esteem. Dr. Jorge Juncos, a neurologist at Emory University in Atlanta, explains, “The child at some point begins to think of himself as the embodiment of that problem.”
So how do families deal with Tourette’s?
Dr. Juncos says: “The most important thing starts at home. Usually it comes in the form of family. Once they come to the realization of what this condition is and how it operates, they sort of make a turnaround and go from judgmental to accepting to supportive to loving.”
He says the tics tend to level off as the child gets older, and it becomes easier to cope. “And it’s not a progressive illness,” says Dr. Juncos, “so that you have the odds stacked in your favor. It’s doesn’t affect intellect.”
Marc has persevered. He’s in college now and making good grades. He’s also thankful for the support of his family. “I’m definitely really lucky that I’ve had parents that have always stuck behind me, and I definitely know that they’ve been through a lot and have the utmost respect for them. It’s been a mutual journey … all shaped me as who I am today.”
His father’s praise is equally effusive. “You just marvel and think, ‘God! How does this kid do it?’”
What We Need To Know
Tourette Syndrome is an inherited, neurological disorder characterized by repeated and involuntary body movements (tics) and uncontrollable vocal sounds. Involuntary symptoms can include eye blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder shrugging or jumping. A few patients with TS demonstrate self-harming behaviors such as lip and cheek biting and head banging.
In less than 15 percent of cases, coprolalia exists – where vocalizations include socially inappropriate words and phrases. These outbursts are neither intentional nor purposeful. Associated conditions can include attention-deficit hyperactivity disorder (also called ADHD), obsessive-compulsive disorder (OCD), impulsiveness and learning disabilities.
Symptoms usually appear before age 18 and most commonly between 3 and 10. Males are affected three to four times more often than females. Although symptoms vary from person to person and range from very mild to severe, the majority of cases fall into the mild category. A doctor must diagnose TS by observing symptoms and evaluating the history of their onset. No blood analysis or other type of neurological testing exists to diagnose the disorder. Here are more facts about Tourette Syndrome and its symptoms:
- The cause of Tourette Syndrome has not been found. Current research indicates the disorder stems from the abnormal metabolism of at least one brain chemical (neurotransmitter) called dopamine.
- Tics generally worsen during times of stress, tiredness or anxiety.
- Most people who have Tourette Syndrome lead productive lives and participate in all professions.
- Persons diagnosed with TS have a normal life span.
Children with Tourette Syndrome have the same IQ range as the population at large. Regardless, many do have special educational needs. Data shows that many may have some type of learning problem. That condition, combined with attention deficits and the difficulty coping with frequent tics, often call for special educational assistance. Types of assistance include the use of tape recorders, typewriters or computers for reading and writing problems, and untimed exams (in a private room if vocal tics are a problem) and permission to leave the classroom when tics become overwhelming. An educational evaluation resulting in an identification as "other health impaired" under federal law will entitle the student to an Individual Education Plan (IEP) which addresses specific educational problems in school.
The majority of people with TS require no medication, but medication is available to help when symptoms interfere with functioning. These medications can only alleviate specific symptoms. Neuroleptic and antihypertensive drugs can have long- and short-term side effects, and the use of stimulants is controversial. Relaxation techniques and biofeedback also may be beneficial.
Many people with TS experience marked improvement in their late teens or early 20s. Although TS is generally lifelong and chronic, it is not degenerative. The symptoms of most people with TS improve as they mature. Less than half of those who have Tourette Syndrome as children have moderate to severe tics as adults. In a few cases, complete remission occurs after adolescence. Consider the following additional information regarding Tourette Syndrome:
- Tics are usually at their worst between ages 9 and 13.
- The parents of affected children should learn about tics and Tourette Syndrome and explain these details to people who regularly interact with the child.
- Understand that a child has very little control over tics caused by TS.
- Nearly one-third of patients with TS experience remission of tic symptoms in adulthood.
- A person with TS has about a 50 percent chance of passing the gene to one of his/her children with each separate pregnancy.
- Only 10 percent of children who inherit the gene will have symptoms severe enough to require medical attention.
Resources
- American Academy of Family Physicians
- National Institute of Neurological Disorders and Stroke
- Tourette Syndrome Association
