Pain on a Smaller Scale

The Oucher Scale (www.oucher.org) helps young children gauge their pain so doctors can know if a prescribed treatment is working. Caucasian and Hispanic versions also exist. (Photo ) Mary J. Denyes And Antonia M. Villaruel)

About two dozen programs in the United States specialize in treating chronic pain in children, often combining the expertise of pediatricians, physical therapists, psychologists and acupuncturists; both Children's Hospital in the District and Johns Hopkins Hospital in Baltimore have staff doctors who treat pediatric chronic pain.

Still, many youngsters who need help don't quickly receive it. Families sometimes wait months for an appointment to see far-flung pain experts; many pediatricians in other specialties "are not good at sniffing out which kids are getting into trouble, which kids are developing chronic kinds of problems," said Steven Weisman, director of pain management at Children's Hospital of Wisconsin in Milwaukee. Insurance often doesn't cover all the services needed. The result, experts agree, is that the number of kids with pain far exceeds the number who receive care.

Reality vs. Illusion

In high school I cry everywhere. My spine's curves are 35 degrees at the top and 40 degrees at the bottom. My orthopedist says that scoliosis isn't supposed to hurt. Some classmates wonder aloud if I'm faking pain to escape gym class. I tell myself that the pain is a figment of my imagination.

I develop a strange pastime, studying people on the street and weighing what I would give to be one or another of them -- fat, acne-scarred or homeless, but pain-free. I will be out of high school -- nearly an adult -- before I discover answers for my chronic pain.

While many kids are treated earlier, experts say my experience is not unusual. "I've had kids who say, 'My belly's hurt my whole life,' " said Ken Goldschneider, head of pain management at Children's Hospital Medical Center in Cincinnati.

Some, said Weisman, grow used to having their complaints dismissed.

"It's amazing how high a percentage of patients come to see us . . . [whose doctors] have essentially told them that they don't believe they have pain," he said. Validating patients' complaints is key to helping them cope, he said, and other experts agree. At UCLA's Pediatric Pain Clinic, newcomers receive a set of "golden rules." The first: "The pain is real."

But finding pain's origins isn't always easy. "There's no magic blood test or X-ray for pain," said UCLA's Zeltzer. "It's a very personal experience."

Patty College of Derwood knows the problem. A year ago, her son Casey, now 15, underwent surgery at Children's Hospital in the District to slow growth in one of his legs; they had grown unevenly since a hip dislocation in infancy. But after surgery, Casey suffered pain so intense he couldn't bend his knee. Twice, he was put under general anesthesia while baffled doctors tried to find the source of the problem.

Four months after the surgery, Casey met with pediatric anesthesiologist Lynnae Schwartz, who heads the Children's Muskoskeletal Pain Clinic.With codeine failing to ease Casey's pain, his mother worried that Schwartz wouldn't believe her son.