FWD:Kids' distress is no small thing

Kids' distress is no small thing
By Rita Rubin, USA TODAY
Pain moved into the Gale family's Southern California home almost two years ago to the day.
On May 13, 2003, Jenna Gale, then 10, came home from school and said her knee hurt. Two days later, she couldn't stand. The next six weeks were a blur of medical tests and visits to the doctor. Jenna, a star soccer and basketball player, went to school in a wheelchair.

As Jenna, her parents and her twin sister learned, pain plays no favorites when it comes to age. And yet, as recently as the 1980s, the medical community thought only adults truly suffered from pain. Grown-ups didn't realize that, instead of crying and complaining, children often withdraw and suffer pain in silence. Even when children's pain was obvious, adults were nervous about giving powerful drugs to combat it.

As a result, children's pain, whether chronic, like Jenna's, or acute, such as that from an injury or an operation, was treated inadequately — if at all.

"There were a lot of myths floating around about pain: Kids didn't have pain, or they bounced right back from it, or they didn't remember it," says Judy Beyer, a pediatric nurse researcher at the University of Missouri-Kansas City, who more than 20 years ago developed the "Oucher" picture scale to help children convey how much pain they're feeling. "We've moved a heckuva long way in the past 25 years with pediatric pain, but we still have far to go."

Recognizing that children feel pain at least as much as adults, a small but growing number of children's hospitals have established pain-management programs. They offer a range of treatments, including psychotherapy and physical therapy as well as alternative treatments such as acupuncture. Patients are relieved to find health care providers who believe their pain is real, even though medical tests have been unable to detect its cause.

"We're almost like the last ray of hope," says anesthesiologist Kenneth Goldschneider, head of pain management at Cincinnati Children's Hospital Medical Center. "If it hurts you and you say it hurts, then we believe that."

Before seeing Goldschneider and his counterparts, families often bounce from specialist to specialist in search of a cure.

Initially, Margie Abplanalp took daughter Mandy, now 10, to gastroenterologists for the abdominal pain that has plagued her since kindergarten. They diagnosed irritable bowel syndrome. In the spring of 2003, when Mandy was 8, the pain got so bad that she couldn't sit up in bed, and she began missing school.

Tests showed that her gallbladder needed to be removed, but removing it didn't eliminate her pain. The gastroenterologist sent her to Goldschneider's team. In a few sessions with a psychologist, biofeedback helped her learn to control her pain.

"If I eat spicy foods or ice cream, it hurts sometimes," says Mandy, who also takes an anti-seizure medication that Goldschneider prescribes "off label" for pain. "I have to take deep breaths and hold it."

Although certain foods and missed doses of medicine can still punch Mandy in the gut, "I feel really fortunate," says her mother, a Lawrenceburg, Ind., resident and Cincinnati Children's nurse. "She does well in school, likes to do basketball — a normal 10-year-old."

Jenna's path back to normalcy has been far more circuitous. Her father, Randy Gale, calls her pain "The Terminator." Says Gale: "It has no discriminating thoughts. It just comes in and wreaks havoc on your child and every member of your family. It doesn't care."

Stumped, her pediatrician referred her to an orthopedics clinic, where doctors immobilized her leg in a brace. Bone scans, blood tests and X-rays turned up nothing. Yet, says her father, "you just lightly touched her knee, and she was screaming."

Her desperate parents, thinking she might have Lyme disease, took her to a UCLA rheumatologist who admitted her to the hospital for tests. On the third day of her stay, Jenna's pain finally had a name: complex regional pain syndrome. Her parents had never heard of it. They jotted the name on their hands to remember it.

With this pain syndrome, Jenna's mother, Debra, explains, "you're in pain long after your injury should have healed." In Jenna's case, no one could pinpoint the injury that locked her pain-signaling switch in the "on" position.

Doctors used to think that only adults developed complex regional pain syndrome, says Richard Howard, a specialist in pediatric pain management at London's Great Ormond Street Hospital for Children. Doctors aren't sure how common it is in children, but it seems to affect twice as many girls as boys. Physical therapy of the affected area is the main treatment, Howard says. "It's not intuitively the thing you would do, because it hurts, and they don't want to move it."

Jenna had to wait three weeks for an appointment to see Lonnie Zeltzer, founder and head of the UCLA Pediatric Pain Program. Zeltzer, co-author of Conquering Your Child's Chronic Pain: A Pediatrician's Guide for Reclaiming a Normal Childhood, prescribed two or three physical therapy sessions weekly.

In a month, Jenna was out of the wheelchair and on crutches. By August, she was on a cane, and the family went to Disney World. But on that trip, a bus door accidentally closed on her left shoulder, and the pain in her knee inexplicably moved there. She no longer needed a cane, but she returned to school with her arm in a sling. A physical therapist came to her house to encourage her to use the arm.

And then the pain packed up and moved again. After a bout with the flu in November 2003, Jenna's pain took up residence in her forehead. For the next year, Jenna had daily home sessions of alternative medicine treatments — hypnotherapy, acupuncture, massage therapy and Reiki energy healing — and weekly visits to Zeltzer's clinic.

"I've always believed in sort of a mind-body approach to pain," says Zeltzer, who also suggested that Jenna reduce her stress by transferring to a less competitive private school this past fall.

"Is the pain physical or is it psychological? Is it in the mind or is it in the body?" Zeltzer says. "I think we now know that if you feel pain, there's sensory signaling going on."

Zeltzer's program also offers patients art therapy, meditation, Iyengar yoga and guided imagery. She has done MRI studies that show imagery affects metabolism in brain areas related to pain perception. Her published findings and grants from the National Institutes of Health "make me seem less fringy to the administration here," Zeltzer says.

Still, insurers are not as convinced about the value of alternative therapies for children's pain. Jenna's father says he had to pay out-of-pocket for them.

"We're fortunate that we did have the resources to do this," says Gale, an investor who works at home.

Cost is an issue at the Children's Hospital at Montefiore in the Bronx, where about 85% of patients are indigent, says pediatrician Catherine Skae, head of the hospital's recently established pain service. The Montefiore program is funded by a private foundation's grant, and Skae says she has earmarked thousands of dollars for alternative therapies, but the logistics are tricky: "Even if I send a patient to the acupuncturist, her office is in Manhattan."

Meanwhile, on the West Coast, Jenna says she still has headaches, "but they're not as bad. They're always there, but sometimes they're worse than others." She's in psychotherapy to deal with issues that surfaced during the past two years.

Jenna's dad says he's optimistic that her pain might finally be moving out for good.

"This is the best she's been since we've been through this horrible, horrible nightmare."