A Cognitive-Behavioral Approach in the Treatment of Children and Adolescents Diagnosed with Fibromyalgia
This was the title of a November 13, 2001 session sponsored by the Association of Rheumatology Health Professionals. Over 100 professionals attended the session, the majority of which were pediatricians searching for any information that might help their patients afflicted fibromyalgia (FM), given the limited amount of research in the field.
The presenters were from Schneider Children's Hospital in New Hyde Park, NY and included: Gail R. McIlvain-Simpson, MSN, RN, CS; Beth S. Gottlieb, MD; and Pamela J. Degotardi, PhD. They covered the many aspects of a multi-disciplinary treatment program based on cognitive behavioral therapy.
Dr. Gottlieb discussed medication options and the role of the physician in treating FM. She began with an overview of factors that increase and decrease symptoms in children or adolescents with FM. Almost all defining physical symptoms were identical to those characteristic of adult FM. Behaviorally, the main difference was that the children/adolescents tend to "overbook" themselves and wanted to be as active as possible. The treatment program teaches pacing, symptom management, and problem-solving. Each patient is carefully examined for other conditions that could indicate secondary fibromyalgia, such as juvenile rheumatoid arthritis, lupus or inflammatory bowel disease.
Dr. Gottleib reported that in their juvenile patients, the tender points were most often in the neck and shoulders, the medial fat pad of the knee, and the joint line of the wrist. She described diagnostic criteria for children and adolescents that differed mildly from that of adults. Whereas adults must have pain in all four quadrants of the body for more than three months, children must have pain in only three sites for a period greater than three months, in addition to five or more activated tender points and three of ten minor criteria--such as anxiety, poor sleep, IBS, fatigue, or headaches.
At the Schneider Children's Hospital program, the physician's most important role is not the diagnosis of FM as much as the explanation of the diagnosis and the discussion of treatment options with the family. They encourage going back to school, maintaining normal daily function with fewer extracurricular activities, learning relaxation techniques, adjusting sleep patterns, and seeing a psychologist to assist in identifying and implementing lifestyle changes. They have found that medications are the least important part of treatment in children.
At the Schneider program, the staff functions as a team made up of a rheumatologist, a psychologist, a physical therapist, and a primary care physician. Communication between team members and reinforcement of the treatment protocol by the primary care physician is considered to be of the utmost importance in the success of their treatment program. It has been proven that the early integration of treatment into a child's lifestyle has a very positive effect on life-long outcomes.
According to the presenters, several of the medications commonly prescribed for adults with FM--including NSAIDS, muscle relaxants, analgesics, and trigger point injections--were found to have little or no effect in children with FM. Instead, only tricyclic anti-depressants tend to have a good response rate in their patients. Aerobic conditioning three times a week is also recommended to decrease pain. Alternative therapies such as biofeedback, acupuncture and magnet therapy have showed some promise among their patients, but none seemed to have a long-lasting effect. Supplements such as Kava Kava, Sam-e, St. John's Wort, magnesium, and others were discussed; however, it was noted that no studies have been done in children or adolescents to measure the safety and effectiveness of these therapies.
The most interesting part of the session was a discussion of the parent's role in helping their children cope with Fibromyalgia. The presenters stated that many parents had to be encouraged to remain calm after a diagnosis of juvenile FM syndrome was made; and they have found that both child and parent need to be confident in the treatment protocol. Parents are taught to encourage their children to resume normal activities and avoid illness-maintaining behaviors (such as a mother with FM treating her child with pity and empathy rather than encouraging well behavior). Parents are also asked to advocate for their children in educational and health system issues when necessary. All of these factors along with basic parental guidance are essential to the success of the program.
The program at Schneider Children's Hospital has treated over 150 children with FM. Their initial session is two hours, and follow-up includes psychological booster sessions and monthly meetings for six months. In addition, they meet regularly with all members of the staff to determine improvement and areas that need attention.
For more information on the Schneider program, visit their website athttp://webhost.lij.edu/sch/ped_rheumatology/ped_rheum_general.html
