It takes a village and the world: Tariq’s care for Tourette syndrome

When your child is sick but you can’t figure out the cause or how to fix it, it can leave you feeling helpless and frustrated. It can also test how far you’ll go for answers. Just ask Salem of the United Arab Emirates (UAE), who moved with his family to Boston so his son Tariq could find help at Boston Children’s Hospital.

Inconclusive diagnoses lead to a flight for answers

When Tariq, now 10, began experiencing a chronic cough three years ago, many doctors assumed he had COVID-19. But testing was scarce, and his parents needed more convincing. They grew increasingly worried as Tariq’s cough became accompanied by persistent throat-clearing and shortness of breath. The breathless episodes grew so intense that Tariq was admitted to the hospital more than once.

Tariq was eventually diagnosed with asthma and allergic rhinitis (allergies). Despite a diagnosis, his parents were frustrated by the lack of improvement in Tariq’s symptoms.

“That was a really difficult time,” says Salem. “We were fighting to know what Tariq had exactly. If we knew what he had, then maybe we could make him comfortable.”

They requested a second opinion and their care team in the UAE suggested Boston Children’s. They spoke with Dr. Kenan Haver, director of the asthma program in the Division of Pulmonary Medicine, and things moved quickly from there. Tariq and his family eventually traveled to the U.S. to begin care.

A team greeting and holistic approach

Once stateside, Tariq’s care journey included extensive evaluations by Dr. Haver’s team to get to the root cause of his cough, throat-clearing, and shortness of breath. He was also seen by Dr. Jared Silverstein in the Department of Gastroenterology, Hepatology and Nutrition to assess stomach pain that had been bothering him.

As part of the team’s multidisciplinary approach — and as various conditions were ruled out — Tariq met with Dr. Kinga Tomczak, a neurologist and director in the Tic Disorders and Tourette Syndrome Program.

“When I saw him in my office, it was apparent to me that his cough was neurological — it represented a vocal tic,” recalls Dr. Tomczak.

Vocal tics commonly indicate Tourette syndrome, a neurological disorder that causes involuntary, repetitive movements and vocalizations. In addition to Tariq’s vocal tic, Dr. Tomczak observed mild facial grimaces and eye blinking — motor movements also common with Tourette syndrome.

Though relieved to have a confident diagnosis, Tariq’s parents had questions about Tourette syndrome and its implications. Dr. Tomczak worked with them to better understand the condition as well as what would come next. For Tariq, this meant multiple medications to manage his various symptoms and behavioral therapy to help him be aware of his urges to exhibit tics and find ways to modify his behavior when the impulses arose.

Tariq’s medical care involved careful coordination among Drs. Tomczak, Haver, Silverstein, and their teams to create the best combination of medications for Tariq’s recurrent stomach aches (known as abdominal migraines), asthma symptoms, and neurological symptoms. It was a matter of trial and error, but Tariq remained strong and committed — and so did his parents. Because the process would take time, they made the bold move to pack up their seven children and move to Boston to have easier access to Tariq’s team at Boston Children’s.

“We’d stay as long as it took to help Tariq,” says Salem.

Back from the pain and looking forward

Tariq and his family stayed in Boston for nearly two years as he adjusted to his medications and treatments. They recently returned to the UAE in time for the new school year, confident in their ability to manage Tariq’s medications and facilitate communication between their care teams at home and at Boston Children’s.

With his abdominal migraines and tics at bay, Tariq is a happy, active kid who loves playing soccer and basketball. To his parents, it’s more than they could have hoped for.

“It’s amazing,” says Salem. “We tried a lot of hospitals, and we tried a lot of things. We are very comfortable with everything about our experience with Boston Children’s Hospital.”

Learn more about the Tic Disorders and Tourette Syndrome Program at Boston Children’s Hospital.