When Chronic Pain is a Child’s Companion

November 19, 2016

Boston Globe
Felice J. Freyer

CONCORD — Sydney Durlach’s pain started with a mishap during soccer practice. She iced and elevated her injured foot, and for a time encased it in a boot. But nothing stopped the throbbing, burning, and tingling. Soon, her leg bloomed in shades of red and blue.

More than a year later, Sydney’s foot is still sore, the nerves signaling trouble even though the injury has healed. A wisp of a child with a radiant smile, she can’t run for more than half a minute and can’t sleep through the night.

Sydney is 13 years old, and pain is her daily companion.

It’s common to think of pain as an adult burden, the product of time-beaten joints and aged tissues, but pain also hobbles children. When that happens, youngsters’ suffering is often overlooked or dismissed. Or it gets chalked up to psychological issues — an approach especially troubling to some parents.

Chronic pain lacks the drama associated with better-known children’s health problems, said Dr. Stephen Gottschalk, a cancer researcher at Texas Children’s Hospital. “It’s not a problem to raise money for cancer or a cardiac defect,” he said. “With chronic pain, you might say, ‘Oh, he’s just a whiner.’ . . . Some of these children are left alone with their pain.”

Gottschalk experienced the price of such neglect when his teenage son developed chronic pain after a knee injury. Even though he is a well-connected pediatrician, Gottschalk couldn’t find help in the Houston area. His hospital’s pain center focused on short-term problems, and the local chronic pain specialists would see only adults.

Gottschalk and his son ended up traveling to Boston for treatment.

But even for those who live in Boston, there’s no guarantee of good care. Johann Marin spent much of his childhood hunched over his desk at school, feeling like barbed wire was wrapped around his muscles. A doctor accused him of faking it to get out of schoolwork. His teachers ignored him. Not until he was 20 did Marin get referred to the outpatient pain clinic at Boston Children’s Hospital, where he learned coping techniques and received medication to ease his problem, diagnosed as fibromyalgia. Now 23, he just graduated from high school, will start college in January, and plans to become a doctor.

As recently as the 1980s, doctors sometimes operated on infants without anesthesia, believing they didn’t feel pain, or would forget it in any case. Research has since shown that the nerves don’t forget, and early pain leads to sensitivity years later.

Still, recent federal guidelines on opioid prescribing address only adults, and the Institute of Medicine’s 2011 report on pain devoted exactly two of 364 pages to children.

Chronic pain in children can affect the abdomen, back, muscles, or joints — and often strikes more than one part of the body. Headaches are common. Sometimes, the pain springs from a condition such as arthritis. Other times, the pain itself is the illness, the result of a nervous system gone rogue. Girls are affected much more often than boys.

Dr. Neil Schechter, director of the Chronic Pain Clinic at Boston Children’s Hospital, said physicians today do a good job managing children’s pain from surgery and injury. But chronic pain poses complex challenges, he said. It requires a lot of doctors’ time and intense collaboration among specialists — both tall orders for today’s frenzied, fragmented health care system.

Children’s pain is also complicated by family dynamics and psychological factors. Its intensity can rise or fall based on how children think about the pain, and how their parents react. Fear makes pain worse, and so does stress; relaxation and distraction can ease it.

Parents’ reasonable efforts to protect their children can make matters worse. Kids stay home from school, stop playing sports, let friendships lapse. Inactivity and isolation worsen symptoms — as does the constant fretting that a dangerous physical abnormality is at fault.

“Many of the kids we see have been to a number of doctors,” Schechter said. “They’ve had endoscopies and blood work and imaging studies, and no one has found the hardware explanation to their problems.”

Sydney Durlach, the Concord girl injured at soccer practice, also had her share of imaging studies, all showing nothing wrong with her foot’s anatomy.

Instead, as she learned a month after her accident, she has complex regional pain syndrome, a condition in which the nerves continue to send pain signals to the brain after an injury has healed. Pain, originally the body’s warning to protect a damaged limb, had now become an illness of its own.

“I had never heard of such a thing,” said Sydney’s mother, Amy . “There’s no visible sign that there’s anything wrong with her foot. Yet there’s excruciating pain.”

Sydney could not bear to put her foot on the ground. In the shower, she sat on a stool and draped her leg outside, protecting her sensitive skin from the water’s battering. Her mother drove her to school every day, helping her out of the car and into the building, where she hobbled around on crutches. Her right calf shrank to a stick, the muscle atrophied from disuse.

Sydney was referred to the Mayo Family Pediatric Pain Rehabilitation Center, a treatment program in Waltham run by Boston Children’s Hospital. After months on the waiting list, she was admitted in June.

There she joined five other children, mostly girls, who came every weekday from 8 a.m. to 4 p.m., joined by their parents for the last hour of each day. Eleven staff members, including physical and occupational therapists, worked with the children to improve their functioning — making no promises about ending the pain.

Sydney needed to learn that her foot had the mechanical ability to bear weight, that pain no longer signaled a damaged joint needing protection. She took it step by step — first practicing letting her foot touch the floor, then putting weight on it, then walking with one crutch. By the end of the third week, she was able to put aside the crutches altogether.

“It hurt like a ton,” Sydney said. “But it felt good to be able to walk with two feet.”

For some children, the center prescribes drugs that affect the nervous system, typically anticonvulsants or antidepressants, said Dr. Navil Sethna, clinical director. These drugs are best used short term, he said, because they tend to slow the nervous system, leading to drowsiness and difficulty with thinking and memory. Sydney, however, did not take medications, because her parents were concerned about side effects.

Instead, she relied on the coping skills taught by the rehab center’s psychologist, Caitlin Conroy. Sydney squeezed and stretched a ball of putty, as a distraction. She learned breathing techniques to calm herself and keep moving despite the pain. And the staff urged her to think about what she would gain from persevering — being able to enjoy the activities that other kids do.