What I actually wrote to the editor:
Dear Dr. McMillan:
Thank you so much for including the article “Managing Abdominal Pain in Children” by Osama Almadhoun MD in the March issue of “Contemporary Pediatrics.” As a physician with fibromyalgia, the mother of a teenager with Juvenile Primary Pediatric Syndrome, and a fibromyalgia consultant for children and adults, I was interested in the Rome III diagnostic criteria for Childhood Functional Abdominal Pain Syndrome. Could we be missing pediatric fibromyalgia patients here? I understand that the term “functional” abdominal pain is used to describe abdominal pain where no pathologic condition can be found. I also understand that pediatric fibromyalgia may be difficult for some practitioners to diagnose. But when the criteria for “functional abdominal pain syndrome” includes “some loss of daily functioning and additional somatic complaints such as headache, limb pain and difficulty sleeping,” I felt right at home. These symptoms so accurately describe many of the characteristics of Juvenile Primary Fibromyalgia. It is hard for me to understand how a child with long standing limb pain, headache, trouble sleeping and abdominal pain could not have an identifiable syndrome.
Sadly, many of my patients have bounced from doctor to doctor until their symptoms are recognized as Juvenile Primary Fibromyalgia. Many of them have adult relatives who have suffered the same fate. I hope that soon more members of the pediatric medical community will step up and make the diagnosis earlier so these children can start receiving treatment.
Sincerely,
Melissa Congdon MD FAAP, Corte Madera, CA 94925
What I wanted to write:
Dear Dr. McMillian:
Am I the only doctor in the country who read “Managing Abdominal Pain in Children” and thought there might be a big problem? How could MOST of the children with chronic abdominal pain that causes some “loss of daily functioning” and have “additional problems such as headache, limb pain or difficulty sleeping” have a “benign problem?” Limb pain? And loss of daily functioning for a prolonged amount of time? These symptoms are not benign in the life of the affected child and their families. Some of these children may have Juvenile Pediatric Fibromyalgia, but many pediatric specialists are hesitant to make this diagnosis in children as not to “label” them. One of the fellows in the Pediatric Rheumatology Department at a major university hospital in my area told me they NEVER make the diagnosis of pediatric fibromyalgia in children–they call it a “pain amplification syndrome.” As a physician with fibromyalgia, a parent of a teen with fibromyalgia and a fibromyalgia consultant for children and adults–believe me–this delay in diagnosis is not doing the child or family any favors.
Children with fibromyalgia respond very well to treatment. The earlier they are diagnosed the more quickly they will respond to treatment, giving them a better chance to be pain free and experience the joys of childhood! Juvenile Primary Fibromyalgia is a REAL syndrome and should be treated as such. Please use your excellent journal as a forum for specialists to share their knowledge of pediatric fibromyalgia so that we all can benefit.
Sincerely,
Melissa Congdon MD FAAP, Corte Madera, CA 94925