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Beating the Pain
Katie Bickford remembers the pain starting in the 7th grade—it began in her spine and radiated out all over her body. The pain got so bad she couldn’t walk. To make matters worse, she fractured her heel, and then her arm, so it hurt to use crutches. She used a wheelchair to get around, but in her house where the wheelchair wouldn’t fit, she resorted to crawling, developing thick calluses on her hands and knees. She could no longer function and stopped going to school.
Her bone fractures were a result of weak bone density, likely caused by the chemotherapy she underwent at age 4 for acute lymphoblastic leukemia, now in remission. But doctors could find no direct cause for the full body pain she was experiencing. She saw multiple specialists, and despite trying medication and outpatient therapy, nothing seemed to help. Over the years, the pain only worsened. Eventually, doctors recommended that she see a psychiatrist.
Katie felt like the doctors didn’t believe her and thought she was making up the pain. “I used to stay up at night and cry,” says Katie. “I felt like I was defective.”
“It was terrible,” recalls Mary “ML” Bickford, Katie’s mom. “We were scared. We believed in her and we knew the pain wasn’t in her head, so we kept fighting for her.”
A psychiatrist told them about the Pediatric Pain Rehabilitation Program at Kennedy Krieger, which specializes in treating chronic pain resulting in disability. At 14, she was diagnosed with complex regional pain syndrome, a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Sometimes, the pain may begin with an illness, injury, viral infection, or developmental or psychological challenge. In some cases, like Katie’s, chronic pain can continue even when the original illness or injury has healed, or when no source of the pain can be identified.
When Katie arrived at Kennedy Krieger, she was cautious about expecting too much. She had been through therapies before, but nothing had helped. This is not unusual, according to Cynthia Ward, PsyD, pain services coordinator. “When patients come to us, they have tried everything—numerous medications, multiple specialists, outpatient services—without results,” she says.
Understanding Chronic Pain
What’s different about Kennedy Krieger, Dr. Ward says, is its integrated approach to treating pain. Patients are evaluated and treated by an interdisciplinary team, including specialists in rehabilitation medicine, education, neuropsychology, therapeutic recreation, psychiatry, and occupational, physical, and behavioral therapy. The team not only addresses the underlying biological basis of the pain, but also teaches patients and their caregivers the tools they need to cope through behavior therapy.
“Behavior therapy is ideal for helping patients like Katie cope with their pain and their anxiety about pain, so they can do the challenging work of rehabilitation,” explains Keith Slifer, PhD, director of the Pediatric Psychology Consultation Program. By setting achievable short-term goals for patients, therapists help patients gain confidence as they develop better tolerance and regain physical conditioning. This approach reinforces small successes, instills a sense of hopefulness, and challenges the individual to work hard to return to their typical activities. “We help patients reset the focus from what they can’t do to what they can do,” says Dr. Slifer.
One of the techniques therapists use is biofeedback—using instruments to measure physiological responses, such as brainwaves, heart function, breathing, muscle activity, and skin temperature. When patients implement cognitive and behavioral coping strategies, they can see themselves calming down on the computer screen, reestablishing a sense of control over their physiology.
For Katie, guided imagery helped her cope with the pain. “I imagine I’m with my horse Piper or doing other things, and it helps me be okay with the pain,” she says. “When it gets really bad I’ll stop and listen to a CD and focus on the music, and it resets where I am. My whole brain takes a break for a second.”
With her physical therapist, Katie gradually began rebuilding the muscle she had lost while in a wheelchair. She used desensitization techniques to learn to put weight on her foot, and soon moved on to walking with crutches, and then with a cane.
Getting Her Life Back
When her parents visited her, they were thrilled with her progress. “When she saw us coming down the hallway, she got up out of her wheelchair and was walking,” recalls Gary Bickford, Katie’s father. “By the second week, she said, ‘I’m done with the wheelchair. I’m done with the crutches. I don’t need these anymore.’” The bright light was back in her eyes and the smile back on her face.
Katie’s parents met with the team to learn how they could help Katie learn to not focus on the pain. “It’s hard because when my only baby says ‘I hurt,’ I want to hold her and make sure she’s okay, says ML. “But what I really need to do is help her focus on something else—not deny that she’s in pain, but not focus on it.” With the help of her therapists, Katie learned how to better communicate what she was feeling, and her parents learned how to respond to her.
When she had progressed enough to be discharged, Katie was armed with the coping techniques she had learned to help get back to the life she knew before the pain. When summer came, she was at the beach with her friends every day like any other teenager. And in the fall, Katie was able to go back to school, participate in activities like JROTC, and even ride her horse again. The highlight of her year was going to the prom with her new boyfriend.
Although she still feels pain sometimes, Katie is able to cope with it, and it no longer rules her life. Now she has time to focus on more important things, like being a teenager.
“I definitely feel Kennedy Krieger gave me my life back. I couldn’t ask for anything more.”