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It is not unusual, says Scopton, for Berde to go home to say
good night to his children--David, 12, and Anna, 9--and then
return to the hospital to take care of a child who needs help,
particularly one who is dying of cancer and in great pain. It is
also not rare for him to get a 3 a.m. phone call from, say,
India for a consultation about some young patient in pain. "He
has worked almost every day of the week almost since I've known
him," says his wife Evelyn.
Seven years have passed since Alex Uihlein was treated at
Children's Hospital, but Berde remembers him well. "He arrived
in severe pain, essentially confined to a wheelchair, and if
anyone moved his legs or touched them, he would cry and scream,"
Berde says. "He was withdrawn and just in very, very bad shape."
Alex viewed Berde warily. "I was sick of dealing with doctors
who didn't understand," Alex says now. But he found Berde
different. For one thing, Berde listened. "He did understand,"
Alex says. "He believed in me, so I believed in him."
Berde determined that Alex did indeed have reflex sympathetic
dystrophy, a condition in which pain originates from an
abnormality in the nerves. In Alex's case, it was due to
hyperactivation of nerves running from the spinal cord to the
limbs. Alex's legs became hypersensitive to the slightest touch,
and they turned blue with cold, for no apparent reason. The
cause of the disorder cannot always be determined. It often
follows an injury, but Alex's case might have been triggered by
a mysterious viral illness. Untreated, the condition can lead to
loss of muscle and bone and even permanent disability.
Because Alex's pain was so severe, Berde began by giving him an
epidural that numbed his legs for several days, freeing him of
pain for the first time in months. Next Alex began an intensive
program of physical therapy and counseling. He learned
self-hypnosis and imagery to help him cope with the pain, and
Berde prescribed antidepressant medications--not because Alex
was depressed but because the drugs have been found to quiet the
nerve activity that causes neuropathic pain.
Most important was to get Alex moving, to reassure him that
physical therapy would not harm him even though it would hurt.
Not only would exercise help restore his strength, but Berde had
found that it seemed also to help reprogram and quiet the
misfiring nerves. Alex spent two months in the hospital. By
March, six months after he first became ill, he had begun to
walk with a cane. He recovered steadily, though he still needed
physical therapy and took several years to regain his strength.
Today Alex, at 18, backpacks, skis, plays tennis and kayaks. But
Julia Uihlein thinks that if they had not found their way to
Boston, he might never have recovered. She has met other
patients with his condition who went untreated for years, and
they have not fared well. "Listening to patients," she says.
"That's where Dr. Berde started. It seems elementary, but it's
really so profound." The greatest tribute, however, is that Alex
is thinking about a career in medicine. He spent this summer
working for a Milwaukee anesthesiologist who trained under
Charles Berde.
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