A CHILD'S PAIN

Looking back, trying to pinpoint the moment in 1990 when she first knew something was wrong, Julia Uihlein recalls a September afternoon, a soccer game and the ashen face of Alex, her 11-year-old son. Alex was not injured, but he had suddenly become so pale and ill looking that his coach pulled him out of the game. What had at first seemed to be the flu soon took a frightening turn. Constant, burning pain in his legs kept Alex awake at night. The slightest touch, even by a bedsheet, hurt unbearably. He began to have trouble walking.

The doctors were stumped. "My worst fear was that it was a tumor on his spinal cord," his mother says. The Uihleins (pronounced E-lines), who live in Milwaukee, Wis., took Alex to several respected medical centers in the Midwest, but none had an answer. One doctor even accused Alex of faking. "He said, 'You deserve an Academy Award,' " Alex says bitterly. For a day or two, even Julia began to doubt her son. Then, she remembers, "I said, 'Let's get out of here.' "

By November, Alex needed a wheelchair. Julia kept calling doctors. Finally, a neurologist suggested that Alex might have an unusual nerve disorder known as reflex sympathetic dystrophy. He urged Julia and her husband David to take their son to Children's Hospital in Boston to see a doctor named Charles Berde.

A pediatrician and anesthesiologist, and an associate professor at Harvard Medical School, Berde, 46, is co-founder and director of the pain-treatment service at Children's Hospital. That service, established in 1986, was among the first in the U.S. to specialize in children's pain. Fewer than a dozen American hospitals provide such departments for children.

The staff includes doctors, nurses, psychologists, physical therapists and an acupuncturist. They treat children in the hospital and in an outpatient clinic for both acute and chronic pain--due to surgery, injuries, cancer, cystic fibrosis, AIDS, sickle-cell anemia, migraine headaches, hemophilia and nerve disorders. The team is nationally recognized for its expertise in treating the reflex sympathetic dystrophy that Alex Uihlein's doctor suspected. Berde is also a leading researcher in pediatric anesthesiology, and he has written more than 70 scientific papers and 50 book chapters dealing with ways to improve the prevention and treatment of pain in children. No child in his care is ever accused of faking. "They're not crazy, they're not faking, they're not making it up, they're not lying," he says. "Pain is real."

Berde likes and respects children, and he has known he wanted to work with kids and families ever since his medical-school days at Stanford, where he also earned a Ph.D. in biophysics. He is calm, soft-spoken, easy to talk to and genuine: not given to calling his young patients "Pal" or "Dude" or demanding high-fives. Pictures of his two children abound in his cluttered office. His beard gives him a slightly impish look, and he is not tall enough to tower over his patients.