Levi Englebright is the kind of kid every parent dreams of: incredibly bright, ambitious, gregarious, kindhearted, active and engaged. The Gig Harbor 8-year-old loves to be involved in everything from chess club to theater to volunteering at the local soup kitchen, but perhaps most notable is his remarkable athletic ability — from the moment he hit his first baseball at age 2, he’s been a standout player. Other than that, there’s never been anything too different about Levi. That’s why his recent diagnosis of Tourette syndrome surprised his family so much.
Recognizing the symptoms
Three years ago in the spring, Levi’s mom, Krissa Englebright (full disclosure: Krissa is my sister; Levi, my nephew), noticed a small but recurring movement in her son’s shoulders. “He would tense his neck and shudder up his shoulders,” she recalls. “We weren’t that concerned; it was just a weird little thing.” But when it persisted, she mentioned it at Levi’s well-child checkup a few months later. The pediatrician said it was probably nothing, so they stopped worrying. Eventually, it went away.
Fast-forward to spring 2013, when Levi began sniffing and blinking his eyes repeatedly. “I remember thinking he must be having a really bad allergy season,” Englebright says, but blowing his nose and using eyedrops didn’t help. Then, over the summer, a repetitive and violent-looking neck snap caught his mom’s attention. “At first I thought maybe he just needed to be adjusted, so I took him to the chiropractor,” she explains. “But the more I talked to him about it, the more I realized it seemed to be involuntary — he didn’t really have any control over it.”
Shortly afterward, Levi began jerking his hands up sharply, which is when Englebright took action. “I started researching and found information on Tourette syndrome that said most parents don’t even notice their kids’ tics, like sniffing and blinking,” she says. “That’s when I thought, Oh my gosh, all these weird little things have been tics. He’s had five tics over the last two years. We need to go to the doctor.”
Receiving a diagnosis
Kyle Steinman, M.D., a pediatric neurologist at Seattle Children’s Hospital, says that parents frequently don’t recognize subtle tics. “When they think of Tourette syndrome, many people think of loud outbursts of curse words,” he notes, “but that’s a symptom in a minority. Most are much less intrusive. And it is certainly very common for parents not to notice them or [to] attribute them to something else, such as allergies.”
The Centers for Disease Control and Prevention (CDC) defines a tic as a sudden and repetitive movement or sound that a person seems to make involuntarily. There are two categories of tics: motor (involving movement) and vocal (involving sound). Tics may be as minor as sniffing, clearing the throat or blinking, or as dramatic as sudden arm flailing. Typically they first appear in children between the ages of 6 and 8, vary in severity and will come and go, sometimes disappearing for weeks or months at a time.
When two or more motor tics and at least one vocal tic have been observed over the course of a year, a diagnosis of Tourette syndrome may be given. Tourette’s and less severe tic disorders (in which only one tic is present) are neurologic, brain-based disorders characterized solely by tics, meaning there aren’t other symptoms to watch out for. The cause of these disorders is unknown, and there is no cure.
Though it’s often considered rare, Tourette’s may be more common than most of us realize. “Based on what we know now, about 0.5–1 percent of kids can be diagnosed with Tourette’s,” Dr. Steinman says. However, “the number of children who have had a tic or tics, often without ever receiving a diagnosis, is certainly much higher. I’d say somewhere around 10 percent.”
When it comes to managing Tourette’s, a little knowledge goes a long way. There are medications that can help minimize tics, but Steinman doesn’t often recommend them because of side effects. “Unless the tics are truly functionally impairing, the best course of action is simply education,” he explains. “It’s very important that the parents, the child, teachers, peers, other care providers and medical professionals treating the child have a clear understanding of what Tourette’s is: It’s not dangerous, it’s just the brain being wired a little differently. That knowledge alone can make it much more tolerable for the child to [the point] where no other treatment is necessary.”
Unfortunately, Tourette’s tends to get worse before it gets better, often peaking in severity during adolescence — a time already wrought with insecurity for many kids. Stress has a tendency to exacerbate the severity of tics, Steinman says, which can lead to anxiety and depression. According to the CDC, up to 80 percent of people living with Tourette’s also suffer from another mental health, developmental or behavioral disorder.
Luckily for the Englebrights, Levi’s Tourette’s has yet to impact his schoolwork, athletics, social life or self-esteem, so he hasn’t needed a treatment regime. Even so, understanding that this is a syndrome he will have for the rest of his life “was really hard,” Englebright says. “But everyone on this earth has challenges, and they come in all different forms. This is Levi’s challenge.”