Doernbecher Pediatric Pain Management Center is one of a few of its kind in the United States
On a recent trip to Disneyland, 18- year-old Mandie Arai received stares of disapproval as her friends wheeled her to the front of the lines at the park. What the people in line didn't see was the pain in Mandie's ankle that prevented her from walking miles around the famous amusement park.
"People gave me evil glares because I didn't have a cast or appear handicapped, so they figured as a teen-ager, I was faking it," said Mandie.
There isn't a day that goes by that Mandie doesn't feel pain and think about how it limits her life. The pain started four years ago when the Camas, Wash., girl injured her foot playing basketball. At the time it seemed minor, but even after the injury itself healed, the pain persisted and intensified. To make the situation worse, Mandie couldn't find a physician who could figure out the cause of the pain or how to treat it. Finally, she was referred to Doernbecher Children's Hospital's new Pediatric Pain Management Center, the first of its kind in Oregon.
"This clinic has been a lifesaver for our family," said Becky Arai, Mandie's mom. "Here we have a whole team of people working with Mandie to help her deal with her pain. They're willing to try the unexpected, and don't give up."
Doernbecher's Pediatric Pain Management Center uses a multidisciplinary model to treat children's pain. Pain that may be caused by cancer, surgery, injuries or migraines. The team uses fewer procedures than adult treatment centers, and physical therapy is a primary focus of treatment. Other treatments include medication, imagery, acupuncture and counseling. Jeffrey Koh, M.D., director of the program, has cared for Mandie since June 2001. His team has tried different approaches to help reduce her pain, including physical therapy, medication and acupuncture. Unfortunatately, it has been a slow process.
"It's frustrating because she's working so hard to be functional, and I want to make her better, and it's just not happening as quickly as I'd like it to. That's the thing about chronic pain ... sometimes it doesn't get better in two months or six months ... it may take a year or two years," said Koh, who is also an associate professor of anesthesiology and pediatrics in the Oregon Health & Science University School of Medicine.
The clinic helps patients cope emotionally with their chronic pain as well. Mandie explained, "Not only do I have to face pain every day, but I also have to deal with people who don't understand my situation. At Disneyland when people in line stared at me, it made me feel angry and hurt because they assumed I was faking it and didn't need the wheelchair."
Until last year, there was no place in Oregon for most children with chronic pain to turn. Pediatricians found it hard to find physicians who were experienced and willing to work with these children. OHSU's clinic is one of only a few multidisciplinary pediatric pain management centers in the United States. In its first year, the team treated about 40 patients in the clinic and about 220 children in the hospital, ranging in age from 3 all the way to 20. Koh hopes that as the program becomes more widely known, a greater number of children who suffer from chronic pain can be reached and treated. "We are busier than anticipated in our first year, and we have proved that the need is there," said Koh
He hopes to improve the program's services even more. Koh would like to expand the outpatient clinic services by adding a full-time pediatric psychologist, social work support and a pediatric pharmacist.
The team is currently involved in clinical studies evaluating the use of pain medication in children. Different types of creams applied before intravenous (IV) insertion are being tested to see which is most effective in numbing the skin. Next, Koh's team hopes to explore pain in special populations, such as children with cystic fibrosis. They also hope to gather information on how pain impacts the lives of children and their families by looking at such things as school absence, impact on social life and work absences for parents.
Doernbecher's Pediatric Pain Management Center will also be focusing on education. They are currently working to educate primary care providers, nurses, parents and patients about chronic pain. There are also plans for an ongoing lecture series for visiting professors from around the country as well as a pain conference in conjunction with next year's Pain Awareness Week.
Recently Mandie underwent surgery designed to alleviate her pain. Mandie said the pain management team has helped her to regain a feeling of control in her life, as well as learning to cope with the pain while they investigated the cause. Mandie said, "The pain management program gave me a group of people that cared about me and who won't give up until my problem is solved."