I haven't posted in a while, but just had to respond. My son, who is 6, has very, very similar symptoms to Tyler's. We also had an inconclusive and a negative sweat test (inconclusive on one arm and negative on the other, done the same day). He has had chronic lung and sinus infections since he was about 1, and is almost never without his cough (mostly in the mornings). His BMI is low, diagnosed with FTT and has stomach pains shortly after he starts eating. He's been tested for Chrohn's, Celiac, etc., all negative. His stools vary greatly, this past week they have been mostly been clay colored. His lung x-ray show's lung damage (apparently it looks like TB on the x-ray, but that was negative as well). His bronch culture showed some bugs, can't remember what. His sinus CT scan is a mess. He's going in for sinus surgery on June 20th. He has the best pulmonologist in the world, in my opinion. He never gives up and is the most caring doctor we have ever seen. I completely trust him. It was this doctor that ordered the sinus CT in the first place and then set us up with the ENT. He was also the one to send him to an allergist/immunologist after his severe serum-like sickness reaction to Augmentin, the hospital never bothered to tell us what should be done after he was discharged.
Anyway, after all that, the reason I had to write was because my son is also going to have a biopsy done when they do his sinus surgery. We are in Virginia and UVA (and our pulmonologist) was one of the pioneers in Nitric Oxide testing. It is a huge struggle to get our insurance to agree and pay for genetic testing for CF, so before we went that path, our doctor requested doing the nitric oxide test on my son. His numbers came back very low. High numbers are associated with Asthma, low numbers are associated with/suggestive of a disease called Primary Ciliary Dyskinesia (PCD). This is where the cilia of the lungs and sinuses are either absent or not functioning properly. It can display quite similar to CF, culturing same rare bugs, lung and sinus damage, etc. The treatments are almost identical, daily vest therapy, inhaled and IV antibiotics when needed, antibiotics pretty much at the very first sign of infection, sinus rinses, nasal sprays, inhalers, etc. Most of which my son is already doing, except the vest therapy, which insurance won't cover without a diagnosis. You may want to ask your doctor to do the nitric oxide test, PCD is still relatively new with no genetic testing yet available.
Jmom - wanted to say "hi", I'll be sending you a PM soon.
