July 3, 2018

Helping Kids with Tourette Syndrome Regain Confidence – A New Tic Protocol

Kelly Hughes’ son Aidan, age 12, has Tourette syndrome, and as a result has experienced tics throughout most of his childhood. Over time, he developed more complex tics, as well as co-occurring conditions like ADHD and OCD.

As diagnoses piled up, and doctors continued offering the family new theories and suggestions as to how to manage Aidan’s tics, Hughes finally had enough and took their pediatrician’s advice: “If the tics aren’t bothering him or hurting his grades, then they’re not a problem,” he said. “If they’re a problem for others, that’s their problem.”

“I wholeheartedly agreed,” said Hughes. “Overall he was doing well, so I thought we would just chill out with the doctors for a little bit.”

As it turns out, however, Aidan wasn’t doing so well. As a preteen entering middle school, he was starting to feel self-conscious about his tics. This became clear to Hughes last September on the night of Aidan’s 5th grade orientation. Even though Hughes suggested Aidan sit up front so that he could focus, he wanted to sit in the back. The reason: He didn’t want others seeing his tics.

“He’s getting older, and I was willing to let him make his own decision about where to sit, but the reason for it broke my heart,” said Hughes. “That was the first time he had vocalized any embarrassment about what other people thought of him. I knew we had to do something. I didn’t want him in the back of the classroom trying to hide instead of making friends. Middle school is tough enough as it is.”

That night, Hughes went online to the Tourette Association of America (TAA) to revisit a list of providers she had come across before. These were providers who specialized in a new behavioral protocol for treating tics known as cognitive behavioral intervention for tics (CBIT). However, none were near the Hughes, who live in Winston-Salem. The closest practitioner was in Asheville at Mission Children’s Hospital – Jarod Coffey, LCSW, a behavioral health provider at Olson Huff Center for Developmental and Behavioral Pediatrics.

“I just said to myself, ‘we’re going to do this,’” said Hughes. She soon contacted Coffey, and that phone call was a game changer. “Jarod was amazing from day one,” Hughes said. “When I talked to him, I felt confident he could help us.”

What Are Tics, Exactly?

Tics are involuntary motor movements or vocal expressions that are typically related to a tic disorder, such as Tourette syndrome, which usually presents in childhood. Some tic disorders are transient, while others can persist into adolescence or even adulthood.

CBIT Protocol for Tics

While tics are not all that uncommon in children (they’re experienced by about 1 in 100 children, according to the TAA) the new cognitive behavioral protocol for tics, known as CBIT, is.

CBIT has been successful in the majority of children who have undergone the treatments. However, the number of practitioners who are trained in CBIT is relatively rare. Coffey is currently one of only three providers in North Carolina who offers it.

Coffey received training in the protocol a few years ago and has been offering it at Mission ever since. “Right away I was having great success in getting tics to settle down and even stop happening,” he said. “It was quite a change compared to when I first saw many of the same kids.”

CBIT is a combination of function-based interventions and habit-reversal training, explained Coffey. The function-based component evaluates the things that happen just before and immediately following a tic, and identifies ways to control those variables. For example, if a child who experiences a tic and then is told by a parent to try to control the tic or to not do it again, the anticipation of scolding can make the tics increase. Likewise, if the scolding, or any other type of trigger, is withdrawn, tics will likely decrease.

The habit-reversal component is where the cognitive behavioral techniques really get interesting. This treatment is designed to help the child become more aware of the urge he or she feels right before a tic so that he or she can then do a competing exercise at the same time. For example, if the child’s tic is an arm movement, Coffey trains him or her to straighten the arm until the urge goes away. This isn’t simple habit reversal; it’s a way to neurologically reduce the urge to express the tic.

Often, the practitioner or parent will need to experiment to find the exercises that work best for their child’s particular tics. Coffey has treatment protocol manuals he walks families through to identify exercises they can try.

The combined protocol is very effective and typically sees quick results. “Using this, we can get very good control over tics within a relatively short amount of time – a few weeks to a month,” said Coffey.

Putting the Protocol to Practice

Hughes said Aidan started experiencing relief by his third visit with Coffey. “By then it was already like night and day,” she said. “I got my child back. Just the look on his face – it was a face I hadn’t seen in so long.”

Early in his treatment, Aidan went from a maximum of 36 tics in a minute to one to two tics a minute. As he continues the protocol, Hughes reports that Aidan’s tics are becoming even more manageable over time.

The CBIT protocol is recommended for most children with tics, said Coffey. “So far in my practice, there has only been one kid who didn’t respond to it, and that issue ended up being a neurological issue and not a true tic,” he said.

This brings up a point that Hughes said is important in identifying who can benefit from treatment. CBIT is designed for children with a tic disorder like Tourette syndrome. Not all repetitive movements are tics. For example, children with autism experience repetitive motor movements to self-soothe or express excitement. “Even though they look like tics, we may not want to get rid of them because they serve a purpose,” said Coffey.

Children with true tics, however, experience great relief as the tics decrease. “These kids go through a lot of suffering when their tics go untreated,” said Coffey. “Fortunately, the suffering is unnecessary. We have an effective, accessible treatment here for those children, and for those who also benefit from medications, our doctors can help with that.”

Once a family learns the protocol, treatment sessions with Coffey can discontinue as the family puts CBIT into practice at home. “We had it down in about four or five sessions,” said Hughes. “Aidan’s really focused and motivated because he doesn’t want this to be a hindrance any longer.”

Seeing the success of this treatment has really boosted Aidan’s confidence, said Hughes. “This has been a blessing and a relief,” she said. “The confidence is carrying over into Aidan’s school life and social life. He is so much better and so much happier now.”

To learn about all of the specialist services at Mission Children’s Hospital, visit missionchildrens.org.

Jarod Coffey, LCSW, is a behavioral health provider at Olson Huff Center for Developmental and Behavioral Pediatrics.