From medication to baking cookies, children’s hospital offers unique therapy to kids in chronic pain

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Editor’s Note: With the exception of Lucy, the names of the children mentioned in this article have been changed at the request of the Pain Management Center at Stanford’s Lucile Packard Children’s Hospital.

Nina Martin wasn’t worried when her daughter Lucy sprained her ankle in P.E. class last March. Lucy was active and loved the outdoors; the 8-year-old seemed motivated to get back on the soccer field with her teammates. Sure enough, the injury seemed to heal with time. But then, Lucy sprained her ankle again, playing soccer. Then again, when she tripped at a friend’s house. Soon, she was on crutches — and something strange was happening. Lucy began feeling a sharp, burning pain in her left foot. She stopped putting weight on it, but after three months, the pain was so bad, she would no longer let anyone touch her foot.

In an age of medical research and technology, chronic pain, and the way it rewires the brain, is still a mystery — and chronic pain in children is an even less understood phenomenon. It’s also far more common than anyone would imagine. The American Pain Society estimates that chronic pain affects 15-20 percent of children.

Severe chronic pain affects up to 20 percent of children. The Pain Management Center at Lucile Packard Children's Hospital offers unique therapies to help hospitalized children manage their pain.

“It wasn’t that long ago that there was a belief that children and infants don’t experience pain. Infants weren’t receiving medication for procedures,” said Laura Simons, a psychologist at the Pediatric Pain Rehabilitation Center at Children’s Hospital Boston.

Even today, few hospitals specialize in pediatric pain.  However, a growing awareness of the issue is drawing new attention to programs like those at Children’s Hospital. According to Simons, the National Institution of Health has been expanding the research devoted to chronic pain, allotting more funds for research that benefits programs addressing pediatric pain.

Fortunately, Lucy lives in the San Francisco Bay Area, home to the Pain Management Center at Stanford’s Lucile Packard Children’s Hospital, one of the country’s leading pediatric pain clinics. Founded in 1993, the clinic has been a leader in creating a multi-front approach to pain treatment in children, encompassing a combination of medication, physical therapy and emotional and cognitive solutions.  Through the clinic’s ongoing efforts, doctors and therapists are finding new ways to help patients like Lucy cope, and sometimes, recover.

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Here’s a look at how the process works.
It’s November, and Elliot Krane is glancing impatiently at the clock. It’s 9 a.m.  “I don’t know where my nurse practitioner, my physical therapist, or my translator are,” he says, picking up the phone to call them from his office in the Pain Management Clinic.  For 15 years, Krane has led the Lucile Packard’s Pain Management Center, where Lucy went for care. One of the first pain specialists to build a program just for pediatric patients, Krane has pioneered an approach that brings psychologists, anesthesiologists, physical therapists and even acupuncturists together to address a child’s discomfort.

“Even acute pain rewires the brain in ways that we’re just beginning to understand,” Krane said. After months, or even weeks of pain, a child may begin to notice that there are rewards that come with complaints of pain. Many distressed parents coddle their children, excusing them from chores or giving them special treats to diminish their child’s discomfort. But negative outcomes result as well: absence from school may isolate a child from his or her friends and a parent’s preferential treatment of an afflicted child among his or her siblings may exacerbate the relationships between them.

This morning, Krane has the clinic’s main office to himself, but usually, it’s the office of at least six or seven other medical professionals. Eight swivel chairs cluster around six computer monitors, three on each side of the “working” room of the clinic. This is where Krane’s team usually convenes before, after, and several times during evaluations with new patients to discuss a diagnosis or plan of action. Sometimes, they argue over whether the patient displays signs of arthritis or a heart condition. Other times, they wonder if the patient is faking it. They hardly ever agree. That’s the point.

Many of the children who come to Krane’s pain clinic have seen a plethora of professionals about their ailments, with little treatment result beyond more pain medication. At Stanford’s pain clinic, the parents and children can expect to hear a variety of possible approaches for their child’s treatment, born of the many combinations of therapeutic opinions that Krane’s team brings to the table. From recurring abdominal pain to chronic migraine headaches, the Stanford pain clinic has treated a multitude of conditions, many of which can affect a child’s development.

Lucy spent the summer after her injury on crutches, putting her on the sidelines for activities like the obstacle course. “There was a lot of running around,” she says. “I didn’t get to do any of that stuff.” Her pediatrician eventually referred her to Stanford’s pediatric pain clinic, and in the first few minutes of their meeting with one of Dr. Krane’s colleagues, pediatric anesthesiologist Genevieve D’Souza, Nina Martin knew this experience would be different. “Everything was completely directed at Lucy and all the answers came from her. We hardly said a word, for an hour and a half,” she said.

While the patient’s parents can be a great resource, Krane says, ultimately he cares more about the child’s words when he evaluates a new patient. Lucy described the pain in her left foot to Krane and a physical therapist, who diagnosed her with complex regional pain syndrome (CRPS). Patients with CRPS experience pain disproportional to their original injury, and Lucy’s pain, which she described as an eight out of 10, was certainly not typical of a sprain.

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Fifteen minutes past 9 a.m., Krane’s translator and nurse hurry into the room. Although both apologetically provide explanations for their tardiness, Krane is visibly annoyed. He doesn’t like to keep people waiting, and the patient they’re seeing this morning has traveled from Watsonville, more than an hour’s drive away. Krane strides into the new patient’s room without his physical therapist, greeting the 16-year-old and her mother, who speaks only Spanish, with a firm handshake.

The object of many eyes, the teenager sits self-consciously in a chair in the corner of the room, resting her flip flops gingerly on the floor. She has come to the clinic with her parents to find relief for her feet, where she has felt tingling and burning sensations for two months. Krane begins with a recap of the girl’s medical history as the translator whispers the record to her mother in Spanish. He slows to hear his messages translated to her mother when he gets to the part about her daughter’s foot pain, watching her closely for a reaction. When he suspects the translator is extrapolating and asking the mother extraneous questions, he interrupts. “Can I ask the questions?” he asks. “You’re breaking my train of thought.” Krane’s terse request is met with a hush in the room, and he focuses his attention on the patient. “Has the pain in your feet affected your daily activity, Sarah?”

Like the patient Krane is seeing today, Lucy found her injury significantly hindered her daily activity—and was serious enough to merit two weeks of hospitalization at the clinic. Lucy spent the first two weeks of school in the hospital with an epidural catheter in her upper left thigh, through which an  anesthesiologist dripped pain medication. As Lucy’s pain medication ran close to her sciatic nerve, the largest nerve in her leg, she lost feeling in her leg and foot. The numbness allowed therapists to touch and gently move her affected ankle, which was now showing signs of muscle loss.

Each day Lucy spent in the hospital, she attended morning and afternoon sessions with both a physical therapist (who focuses on larger muscles like those used to walk) and an occupational therapist (who focuses on smaller muscles liked those used for writing). Lucy also met with a psychologist to help her understand how to function with the pain in her leg. Krane’s team couldn’t be sure that Lucy would be pain-free after her stay at the hospital, and her psychologist hoped to prepare her for a variety of outcomes.

While Krane might give parents second priority during an evaluation, he’s acutely aware of their role in their child’s treatment and recovery. Parents of children checked into the hospital are given a weekly “care conference,” where each professional working with the child meets with the parents to update them on their child’s progress.

On a late Friday morning, Brenda Golianu, an anesthesiologist and lead acupuncturist for the pain center, leads one such discussion with the mother of Maggie, a young girl being treated for CRPS in her wrist. Like Lucy, an epidural catheter has been placed in her upper arm to reduce her pain and numb her wrist for therapy. After twisting her wrist during a basketball game, Maggie’s pain escalated to the point where she avoided using it completely, constantly holding her right hand to her chest. She wouldn’t let anyone touch it; even blowing gently on the injured wrist caused her pain and anxiety about her recovery.

Maggie’s mother, a slight woman with a large eyes and a furrowed brow, seems overwhelmed by the number of people who have come to discuss Maggie’s progress with her. She thanks the staff multiple times for speaking with her and hesitantly sits down at the round table in the staff kitchen, where her daughter’s physical therapist, occupational therapist, psychologist and Golianu already wait for her with sympathetic eyes.

Maggie is a model student. She receives many A’s on her report card and spends hours on her schoolwork without her parents telling her to. She is a diligent athlete, running her heart out on the field despite the curled hand she’s held close to her chest for the last two years. Although these qualities are admirable, they make it difficult for the therapists to work with her. Maggie expects nothing less than a full recovery from her pain; anything short of that she sees as a failure. Her desire to control her recovery means she’s sometimes unreceptive to efforts to help.

The therapists working with Maggie admire her drive but see her determination to heal completely as one of her biggest challenges to recovery. Allison Paterson, Maggie’s occupational therapist, reports that at the end of Maggie’s second day at the hospital, she had opened up to other ways of approaching her pain. “She was letting me touch her arm and saying things like, ‘I want to get better. I’ll try,’” Paterson tells Maggie’s mother. Her change in attitude allowed Paterson to bend Maggie’s wrist at a 15 degree angle, something Maggie has not been able to do in a long while. By the next morning, however, Maggie’s attitude had shifted again. She refused to allow Paterson to touch her arm as she had on her first day at the hospital, and appeared more withdrawn than she had the day before.

Maggie’s mother knows her daughter better than any of the five professionals clustered around her, and eagerly jumps in to give the team context.

“Maggie is very self-motivated. I remember her saying in the past, ‘If I ever get a B, I’m going to die,’” says her mother. “I don’t know where she gets that kind of thinking, though,” she adds. “My husband and I have shown her our report cards, so she knows that we were not straight A students.” Leaning toward Maggie’s wide-eyed mother, Paterson speaks softly and swiftly as she assures her that Maggie’s developments are steps in the right direction. Her mother, however, cannot help but wipe away tears at the memories of Maggie’s struggle with her pain.

Susan Lim, the pain center’s administrator, witnesses the distress of parents like Maggie’s mother every day. She spends many hours on the phone with parents calling to schedule appointments with Krane, eliciting a coherent account of their child’s condition from the sometimes impassioned versions of their child’s story.

“[These parents] are on their last leg,” she says. “It’s not a quick phone call where you’re saying, ‘see you tomorrow, talk to you later.’” She knows from experience. Two years ago, a car traveling at 50 mph hit Lim’s teenage daughter as she crossed the street in front of their home to go to the beach. The impact shattered her hip and lacerated her liver; Lim had to watch her daughter relearn how to walk, roll and sit up in bed. Although Lim can empathize with parents, she also sees how they can stand in the way of their child’s progress, even if they do it inadvertently.

“What parents don’t realize is that when they’re saying things like, ‘she can’t do this, and she can’t do that,’ their child[ren] are hearing this,” she says. Children may adopt this language in thinking about their pain, assuming that if their parents think they can’t play football or soccer anymore, maybe they really can’t.

While Lucy was receiving emotional counseling from her psychologist, her parents also met with a family therapist to address their concerns. “We met with her a couple of couple times to understand how to work together so that [Lucy] was able to control her pain,” Martin said. She was surprised when they were asked if Lucy has any siblings (she does not), because one child’s pain may affect the other kids in the family.

She and her husband were encouraged to visit Lucy only during the hospital’s evening hours so their daughter could focus on her treatments. One night, Martin arrived to find Lucy with a freshly baked batch of sugar cookies. Lucy explained it had been part of her occupational therapy for the day, a concept that initially struck Martin as strange.

“I thought to myself, ‘how can this be therapy?’ And the therapist explained to me that she had to stand up on her feet to measure the ingredients. If you’re in pain and you haven’t been on your feet in months, to have the result be sugar cookies was really smart,” Martin said.

By the end of two weeks, Lucy’s physical therapist was able to get her to do the hyper jump, an exercise that required her to jump through a series of rope loops.

Sandy Sentivany-Collins, one of the pain management clinic’s nurse practitioners, has worked with the program since its inception in October of 1993, when she assisted Dr. Yuan-Chi Lin in developing it. Because so few programs existed in the country to address pediatric pain, Sentivany-Collins reports that there weren’t a lot of examples to go from. Now, Stanford’s clinic is one of a handful of institutions setting the standard for other hospitals.

Lucy and her parents said they feel lucky to have been referred to Dr. Krane’s program. “Here was a kid who was so determined to have fun over the summer. She actually hiked a mountain on crutches. That was her,” Martin said. At the end of two weeks in the hospital, the pain in Lucy’s foot had decreased to the point where she was able to walk without crutches for the first time in months.

The therapists had worked with her daily, gradually directing Lucy to put more weight on her left foot. Lucy had also attended classes at the in-hospital school, which allowed her to stay on top of her schoolwork and ready to return to her classes. Two months after her release from the hospital, she is walking and running much as she had before she sprained her ankle. Not every child that goes through Krane’s clinic leaves like Lucy, but many are at least given the hope that their pain doesn’t have to become the dominant factor in their lives.  For the Martins, the outcome—Lucy’s physical and mental well-being—couldn’t be more positive.

“She really regained her health,” Martin said. “And her happiness.”

Editor’s Note: In an earlier version of this article, Lucy was incorrectly identified by her last name. Additionally, Dr. Genevieve D’Souza performed Lucy’s initial evaluation, not Dr. Elliot Krane as previously written.

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