Biliary Dyskensia with Sphincter of Oddi

[suematsu]

I have a 9 year old boy, underweight small in stature who developed a myriad of gastrointestinal issues after having both the A and B influenza virus October of last year.  Abdominal pain, radiating to the back, constipation and reflux have been an on-going issue since that time.  CT scan showed thickening of his right lung base and mesenteric lymphadenitis, colonoscopy/endoscopy with biopsies showed H-pylori causing ulcers of the duodeum and mild chronic inflammation, UGI showed GERD, HIDA with CCK showed biliary dyskenisia.  All of the above have been treated but the pain remains.  Now the GI is announcing that my son has pain associated depressive disorder (frankly, he's been in counseling since last year for dealing with the pain and issues around having to live with it and the therapist also thinks this is organic - not psychological- and despite records showing pain increasing with fatty foods and pain medication).  The GI refused a ERCP to check for sphincter of Oddi dyskensia -saying that it is a rare disorder in children and ineffective in treating abdominal pain. Where do I turn?  What options do I have?