My 13 YO son has been ill for 5 months now. It started as what we thought was mono but quickly ruled out. His symptoms are upper stabbing ab pain (both sides, below the rib cage), no intestinal disruptions, frequent illnesses including sinus infections, ear infections, arthritic pain in his ankles and hips only (intermittent), low-grade fever (intermittent), extreme fatigue. Appetite - ok. He has not lost any considerable amount of weight and has had upper/lower GI, abdominal CT & sonograms, seen a GI doc, a hematologist and an immunologist, who did not find anything significant. He goes to school everyday but is always feeling horrible; he's just gotten used to the pain, which he says varies from a 6-9 (on a scale of 1-10). The only trigger that he seems to have for the pain is exercise, so much so that he had to give up baseball which was his favorite sport. He is an honor student and a laid back kid. Help! We are all so frustrated, not sure where to turn. He was tested for Celiac Disease and all the other possible intestinal disorders but nothing showed up. The only thing that we have not done is allergy testing (he was tested 6 years ago and had no reactions) or a fecal specimen to rule out possible parasites. Any other ideas?
He needs to see a good rheumatologist (autoimmunity doc) and maybe even an infectious disease doc. I'm not sure where you live, but I'd go to someone with a good reputation at a big academic medical center if you can.
I don't know what the immunologist tested for, but if s/he ruled out antibody deficiencies AND T cell function problems, I'd start thinking about autoimmune diseases and infections. Here are a few that might fit his symptoms:
Usually Wegener's will have some blood in the urine, but not always.
The other consideration is to see a physical therapist and/or an orthopedist. The fact that both ankles and both hips hurt after exercise might mean he has some foot anatomy that throws his ankle and hip joints out of alignment causing pain after exercise, separately from the fevers/fatigue. He is coming into puberty and growth spurt territory too.