As a fifth grade student at Stratford, Bridget Phelan-Nelson used to shout the same series of obscenities every morning. “I said it over and over again on my way to school so I wouldn’t say it at school,” recalls Phelan-Nelson, now 39. She also had multiple motor tics throughout middle and high school, including one that earned her the nickname “Bunny”.
Even though motor and vocal tics are telltale signs of Tourette syndrome, a neurological condition characterized by involuntary and repetitive movements and sounds, Phelan-Nelson was not diagnosed with Tourette until she was 16 years old.
“What most people don’t understand about Tourette is that you can hold back for a while, but if you don’t, it’s going to hurt,” she said. “It’s like the itch that you can’t get to the bottom of your foot, and it nags at you until you scratch it.”
A study from August by the Centers for Disease Control and Prevention (CDC) found that one in 50 school-aged children has some type of tic disorder, including Tourette syndrome. Additionally, boys are three times more likely than girls to be diagnosed.
Tourette syndrome is widely thought to be underreported in children, in part because tics can go unnoticed. The CDC estimates that only half of children who meet Tourette’s criteria have a formal diagnosis.
But doctors around the country have reported an increase in the number of young patients with tics during the pandemic, including teenagers who have developed intense and complex tics, often after watching TikTok videos with the hashtag #tourettes. Instead of being diagnosed with Tourette’s, most of these teenagers —especially women— have what is called a functional neurological disorder, where tic-like movements spread within a group.
“There was an increase in tics during the height of the COVID pandemic, exacerbated by the stress and anxiety of strangers, and compounded by isolation and lack of socialization,” said Dr. Elizabeth Ngpediatric neurologist at Connecticut Children’s.
“Tics may be underreported due to lack of education about Tourette syndrome,” she said.
Awareness, diagnostic tools
Tourette Syndrome recently made headlines when 20-year-old Grammy Award winner Billie Eilish opened up about her childhood diagnosis.
Ng says tics may be underdiagnosed in children if a doctor is unfamiliar with the diagnostic criteria for Tourette syndrome, which includes motor and verbal tics for at least a year before age 18. that are not due to a drug or other medical condition.
This may change through several factors, including increased awareness of Tourette and mental health issues in general and greater media exposure.
“More people have become aware that there is such a thing as Tourette’s syndrome, and when they talk to their pediatrician it can be confirmed,” said Dr. James LeckmanNeison Harris Professor of Child Psychiatry, Psychiatry, Psychology and Pediatrics at Yale School of Medicine.
Eilish’s candor about her condition encourages Phelan-Nelson. “I want to see people like me,” Phelan-Nelson said. “Having the representation out there and showing other people with Tourette’s is important, and the few times you see people like me in the media, it helps reduce the stigma.”
As an account manager in the benefits department of an insurance company, Phelan-Nelson isn’t shy about talking about having Tourette with clients and colleagues. “It helps because the more I talk about it, the more they’ll understand and the less they’ll look at me if I’m having a bad day,” she said. Phelan-Nelson has taken no medications aside from medical marijuana, which helps control her verbal tics and was approved for use in Tourette patients in Connecticut in 2019.
Tourette’s usually begins with simple, subtle movements like blinking in children between 5 and 7 years old and slowly becomes more severe, peaking before adolescence. Despite its portrayal in popular media, coprolalia (shouting obscenities) is rare, affecting only 10% of people with Tourette’s, according to the Tourette Association of America (TAA). “In the majority of cases, we see, the worst tics are at 10, 11, 12 and gradually improving,” Leckman said. “They wax and wane; some individuals’ tics go away completely, but the majority of people I follow still have tics over time.
Medical experts are quick to point out that Tourette has a constellation of symptoms. Of the children diagnosed with Tourette’s, 83% were diagnosed with at least one additional disorder, including Attention Deficit Hyperactivity Disorder (ADHD), behavior problems, anxiety, learning disabilities, depression and autism spectrum disorders, according to the CDC.
Research suggests that boys with Tourette’s are more likely to have ADHD, while girls are more prone to mood disorders. “At least in my experience, girls and women with tics are probably more vulnerable to anxiety and depression than boys,” Leckman said.
Although there is no cure for Tourette’s syndrome, many people control their tics with prescription medications and a form of cognitive therapy called CBIT (Cognitive Behavioral Intervention for Tics), which has become a treatment first line since its introduction just over a decade ago. from.
Treating tics is usually not particularly tricky on its own; what’s harder is tackling the comorbid psychiatric disorders that often occur simultaneously, says Matthew Specht, director of Connecticut OCD, Anxiety, and Tic Specialists and associate clinical professor at Weill Cornell Medicine.
“There are tons of children, male and female, who have a significant number and frequency of tics who don’t have concurrent issues, and they do just fine,” he said. “The presence of additional conditions complicates treatment. We can treat tics, but we should not consider successful treatment of tics as a cure for these other, often more debilitating conditions.
Since Tourette’s is often not diagnosed until children’s symptoms become more pronounced, there is often a lag in treatment, Specht says. “Most of these children won’t be thoroughly assessed or treated until age 10. The good news is that it’s not too late, but it’s harder,” he said. .
“Each study has shown that early intervention yields the best long-term results.” He added that “showing children how to effectively manage their symptoms can unlock potential they haven’t realized.”
For this reason, it’s common for doctors to recommend that children with Tourette’s find and focus on activities they enjoy doing, such as music or sports. “Building on the strengths and interests of the child is something I focus on rather than focusing on issues and problems,” Leckman said. “In the long run, that’s probably going to be the thing that makes the biggest difference.”
This story was originally published on September 19, 2022 by the Connecticut Health Investigation Team.