Children's Mercy to develop new program to treat 'amplified pain'
Preparations are under way for a new program that will make Children's Mercy Hospitals and Clinics a regional destination for young patients who have been unable to get relief from constant, intense pain despite treatment by multiple medical professionals.
"Rehabilitation for Amplified Pain Syndromes" (RAPS), a multidisciplinary treatment program being established under the leadership of Cara Hoffart, DO, MSCE, Rheumatologist, and Dustin Wallace, PhD, Clinical Psychologist, is scheduled to open in early 2013 as an expansion of the hospital's current Integrative Pain Management services. Dr. Hoffart will be RAPS Medical Director; Dr. Wallace will be RAPS Director of Behavioral Health.
Dr. Hoffart and Dr. Wallace share an interest in what are collectively termed "Amplified Pain Syndromes," in which the body takes a mild sensory signal and makes it intensely painful, similar to when a guitar amplifier takes a soft sound and makes it extremely loud. Amplified Pain is an umbrella term that encompasses Juvenile Primary Fibromyalgia Syndrome, Complex Regional Pain Syndrome (formerly known as Reflex Sympathetic Dystrophy), and neuropathic pain.
The condition is a challenge to recognize and treat; often patients have suffered symptoms for a long time, and they and their families are frustrated at failed diagnoses and treatments. Lacking a medical finding, patients are often told they will have to live with the pain, or they hear, "it's all in your head."
"But the pain is very real," said Dr. Hoffart. "Severe pain can lead to significant disability, which greatly impacts the lives of children and their families. While this population may have extreme disability, they also have the capacity to regain full function and pain resolution. I've seen children who have stopped going to school, use wheelchairs, or can't wear clothing due to pain get completely better."
The pain varies from localized to full-body; it is triggered by injury, illness or psychological stress. Other contributing factors include genetics or hormones. About 80 percent of patients with this syndrome are adolescent girls, typically age 14 or 15, with "Type A" personalities-overachievers and perfectionists with some anxiety mixed in.
AGGRESSIVE TREATMENT REGIMEN
"The cure for this is consistent, daily physical activity, not overdoing it, not underdoing it," Dr. Wallace said. "We work hard to get these kids at a consistent level of physical activity with intensive physical therapy, plus stress management and coping skills. Those things together really help kids turn the corner."Â
Treatment involves several hours a day of physical and occupational therapy, pool therapy and yoga. The physical activity hurts and pain doesn't go away immediately, but patients are encouraged to work through their discomfort. Gradually, the therapy retrains the nerves to stop over-transmitting pain signals to the brain. Also, teens participate in music and art therapy, and both teens and their parents receive education and participate in group-based counseling. Patients will spend an average of three weeks in the daily intensive pain rehabilitation part of the program. Most will leave the program fully functioning, and although some pain remains, it usually resolves in three to six months. Another major benefit of the program regimen will be elimination of medications. Often patients are on multiple medications prescribed during their previous treatments.
"My philosophy is very strong toward stopping all medications," Dr. Hoffart said. "Typically patients have been on a lot of medications that maybe have helped a little bit, but never fully take away their pain. From my standpoint, if we can discontinue all drugs we can get patients better with exercise, counseling and relaxation techniques. That's the way to go."
STRONG DEMAND ANTICIPATED
Once established, RAPS will be the only program of its kind in the region. The nearest programs are in Cleveland, Rochester, Minn., and Los Angeles, which leaves a huge area from which Drs. Hoffart and Wallace expect to draw a large number of referrals.
Dr. Hoffart trained in amplified pain syndromes at Children's Hospital of Philadelphia (CHOP) and Dr. Wallace trained at the Mayo Clinic in Rochester, Minn., two of the most prominent institutions treating kids with this kind of pain. These types of programs have lengthy waiting lists: Dr. Hoffart said it takes about three months to get into the CHOP clinic, and an additional three months to get into the actual program. CHOP has about eight patients in its program at a time; CMH will have two to three at a time to start.
"But we anticipate the program will grow quickly," Dr. Hoffart said. "These patients typically don't have a medical home, and it's a growing population with a huge need. We're passionate about this program and can't wait to get started."