Dance is everything to Samantha Butler. Now 15, she started taking lessons at age 3, began competing at age 9, and loved it so much she customarily ate dinner standing up — dancing behind her chair.
But several years ago, Samantha began getting fractures and strains in her feet, with excruciating pain — accompanied by alarming bouts of prolonged numbness throughout her body. “And I started hating going to doctors because it was almost as if they didn’t believe me,” she says.
By the end of 2020, she’d stopped dancing.
But her mother, Anne Butler, was not about to give up. The Butler family turned to M-Irfan Suleman, a pediatric chronic pain physician who founded and directs the pediatric interventional pain management program at Johns Hopkins Children’s Center. He is also the medical director of the pediatric chronic pain rehabilitation program at Kennedy Krieger Institute. His is one of a handful of programs in the country that treat chronic pain in children and adolescents.
“He gave me back my life,” says Samantha.
At their first appointment, in February 2021, Samantha and her mother spent the entire day meeting with a whole team, including Suleman, a physical therapist, a social worker, a behavioral psychologist and a psychiatrist.
“They changed everything for Samantha,” says Anne Butler. “First, they really heard her. Second, they said, ‘We know exactly what this is.’ And, third, they told her to start moving again, that it would take time, but that she would dance again.”
The treatment that Suleman prescribed is a non-narcotic, three-tiered approach. The first tier, he says, is to address the pain itself by calming down the nervous system with oral medications, or, if necessary, injections — which he gives only under sedation using guided imagery. The second is to address any psychological or social issues that have arisen as a result of the pain or which might be contributing to it. And the third is restoring function: getting patients to move again.
“The psychology piece of it is so important,” says Anne Butler. “They know that for kids this age having chronic pain is super scary, and no one had ever said that to us before.”
Samantha was able to stop taking the pain medication after just a few months. She began dancing again last summer and performed in a competition last fall — earning the highest possible score: a platinum.
“Even if I hadn’t gotten the platinum, I would have been so proud,” Samantha says, “because I got up on the stage by myself and danced for the first time, in what felt like a very long time, without any pain at all.”