In the first months of Evan’s life, his parents, Elizabeth and David of Ruskin, noticed something was wrong with the way their baby held his head.

“Whenever Evan would lie on his back, he preferred to turn his head to the right and tilt it up,” David says. “That caused a flat spot on the right side of his head.”

Evan had torticollis, which occurs when a baby has an abnormally tight and short sternocleidomastoid muscle in the neck. The diagnosis is becoming increasingly common in infants.

“Shortening of the muscle tends to pull a child’s head to one side,” says James Chinarian, M.D., rehabilitation medicine physician at Johns Hopkins All Children’s Hospital. “If not adequately treated, children with torticollis can end up with a fairly permanent, even if mild, head tilt, as well as flattening or asymmetry of the skull, which is called plagiocephaly.”

For children with torticollis, prompt diagnosis is key, as the typical treatment—physical therapy—is most effective when a baby’s muscles retain the pliability of early life. Fortunately, Evan’s pediatrician recognized the problem quickly. In February 2017, when Evan was 3 months old, his pediatrician referred him to the newly established Johns Hopkins All Children’s Torticollis Clinic.

Streamlined Care

Torticollis is the most common reason for children to receive a physical therapy referral to Johns Hopkins All Children’s. Last year, Chinarian and pediatric physical therapist Jessica Costa, P.T., D.P.T., created the Torticollis Clinic to give families a single resource to turn to for evaluation by a rehabilitative medicine specialist and a physical therapist, which facilitates an expeditious entry into the physical therapy program at Johns Hopkins All Children’s. The clinic meets four times per month—twice each in Tampa and St. Petersburg.

During the initial appointment, Costa and Chinarian evaluate the patient concurrently and create an individualized plan of care. They determine each patient’s candidacy for physical therapy based on American Physical Therapy Association guidelines. Therapy typically begins within two weeks of the initial appointment. During Tampa clinics, a representative from Westcoast Brace & Limb is available to evaluate children with plagiocephaly for a cranial orthotic device to reshape the skull.

“I don’t know of any other facility in our region that offers a multidisciplinary clinic for children with torticollis,” Chinarian says. “It’s invaluable for multiple experts in this condition to have their hands and eyes on these young patients, and it’s wonderful for families to have access to that expertise in one setting.”

A Positive Shift

In March 2017, Evan began thrice-weekly physical therapy sessions at Johns Hopkins All Children’s Outpatient Care, Brandon, one of several outpatient care centers families can choose to visit for physical therapy based on proximity to their homes.

“The majority of physical therapy sessions for torticollis consist of stretching muscles and soft-tissue work to loosen tightness, as well as strengthening exercises to ensure the spine can hold the patient in a midline position,” Costa says. “Weakness caused by torticollis can cause delays in gross motor skills, so we don’t want to discharge a child until we’re sure he or she has reached an appropriate level with those skills and can hold his or her head in a midline position. Torticollis has an excellent prognosis, provided patients get into physical therapy early and receive proper specialty care.”

Evan, one of the Torticollis Clinic’s first patients, received physical therapy for one year. He wore a cranial orthotic device for much of that time to correct the flat spot on the right side of his skull. As is the case with all patients, Evan and his parents followed up with Chinarian as therapy progressed to be sure Evan’s treatment was on track. By March 2018, both the torticollis and the plagiocephaly had resolved.

“Evan had the best outcome—there’s no noticeable tilt to his head now,” Elizabeth says. “He’s a fun-loving, adventurous toddler. Our success is due to early diagnosis and the continued support of the Torticollis Clinic team—and Evan’s determination to get through this with us.”

This story first appeared in Leading Care magazine.