Tourette Syndrome: What Parents Need to Know
The common childhood disorder, tics to treatment
Though it’s a fairly common childhood disorder — affecting 1 in every 360 children, according to the CDC — Tourette syndrome is often misunderstood. Known to the general public as an affliction that produces torrents of swear words from otherwise well-behaved kids, TS more often presents as a series of physical tics or involuntary movements. (The expected cursing occurs only in 10 to 15 percent of TS patients.)
“Tourette’s is commonly mistaken as a behavioral or psychological condition, but it is a medical problem,” says Susan K. Breakie, chapter leader of the Tourette Syndrome Association of Delaware. To be specific, it is a neurological disorder.
- Motor tics — eye blinking, shoulder shrugging or head jerkingAccording to Breakie, there are four conditions to be met for a TS diagnosis:
- Vocal tics — sniffling, coughing, throat clearing or yelping
- Symptoms must be present for at least a year.
- Usually diagnosed before age 18
No test or scan can diagnose Tourette syndrome; it is a clinical diagnosis based on symptoms. When people see someone with TS display tics, “They may think, ‘He’s just doing that to get attention,’ ” says Breakie, but it’s all involuntary.
Julia of Townsend, DE, was 2 years old when she presented her first TS symptom — eye blinking. At the time, her pediatrician chalked it up to dry eye. When by age 11 she started clearing her throat a lot, a neurologist ultimately diagnosed TS.
Julia’s story is typical: Kids with Tourette’s start showing symptoms as young as 2 or 3, says Sabrina Bosse, a consultant at the PA Tourette Syndrome Alliance. In general, most kids are diagnosed before puberty, between 6 and 10. Symptoms are at their worst around 12 or 13, through the teen years, says Michael Goodman, MD, chief of pediatrics at Cooper University Health Care in Cherry Hill, NJ. For some, symptoms will almost completely subside in early adulthood, though TS is considered a lifelong disorder.
Below are some typical TS symptoms that may present in children.
- Simple motor tics: those mentioned earlier, plus facial grimacing
- Complex motor tics: facial grimacing combined with a head twist and shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, twisting, punching, kicking or hitting.
- Simple vocal tics: those mentioned earlier, plus snorting, grunting, barking or chirping
- Complex vocal tics: either echolalia, the repeating of words or phrases, or coprolalia, the uttering of socially inappropriate swear words or racial slurs — again, not a common childhood tic
Kids don’t always present with all the symptoms at the same time, says Dr. Goodman. Tics may be present for a few days, weeks or months, then replaced by a different one. Nine-year-old Christopher of Churchville, PA, has exhibited 50 different tics over several years, reports his mom, Heidi. TS tics are often more noticeable and significant during times of stress or fatigue, says Dr. Goodman, but any kind of excitement — either negative or positive — can act as a trigger.
Furthermore, “Tourette syndrome rarely travels alone,” says Bosse. In fact, two other conditions — obsessive compulsive disorder and attention-deficit/hyperactivity disorder — accompany TS in many cases. Research from Johns Hopkins has shown that as many as one-third of Tourette’s patients have all three disorders. “You can also see anxiety or depression,” adds Dr. Goodman.
Next page: School with Tourette's and TS treatments
School with Tourette syndrome
“Most children with Tourette’s have normal cognitive ability,” says Dr. Goodman. For the most part, then, they are placed in regular education classes at school, though they may be eligible for special-ed services, says Breakie. Parents of kids with TS have a right to an IEP and testing.
“It’s important for teachers to understand what Tourette’s is, because there are a lot of misconceptions,” Breakie continues. To help clarify her son’s condition, at the beginning of each school year Christopher’s mom gives his teachers a document listing all of his tics, so they have an idea what they might expect from him.
“It’s a constant education process of people who are in contact with Christopher,” explains Heidi. “They may see a tic and think: ‘That’s him being a silly little boy.’ ” Sometimes it’s hard to tell the difference. “It’s definitely a baffling disorder, even when you understand it,” she admits.
Julia, now a 9th grader, is allowed extra time on writing assignments and tests because of tics that affect her writing arm. She doesn’t like to be called on in class, reports mom Melissa, because even momentary anxiety might trigger her tics. Being part of the school band’s color guard is a help, though. “When she’s more focused on stuff, her tics aren’t as bad,” Melissa says.
Children will often suppress tics while they’re at school, notes Dr. Goodman. Then when they get home to their safe environment, their tics come back in full force for the first hour or so. While this may be troubling to parents, there is nothing to worry about. “It’s not harmful to have tics,” says Dr. Goodman.
Despite the challenges they face, children with Tourette syndrome are perfectly normal otherwise. TS is not physically debilitating and children with Tourette’s can expect a normal life expectancy, Dr. Goodman explains. “People with Tourette’s lead full and successful lives,” says Breakie, noting that public figures like actor Dan Aykroyd and top soccer goalie Tim Howard have managed their Tourette’s and gone on to have successful careers.
Suzanne Koup-Larsen is a contributing writer to MetroKids.