My daughter is 8 and has had a chronic cough since the end of 2009. She has a daily cough where she coughs almost constantly some days and then has a few days when she doesn't cough hardly at all that day and then about 12 times a year has a horrible worsened cough that sounds like the croup or bronchitis. We are under the care of a large childrens hospital in our home state but I am not happy with the care she is receiving. We still don't have a diagnosis or any treatment. Her testing shows:
-peribronchial thickening bilaterally on chest xray and CT scan and bilateral hilar adenopathy on chest xray
-moderate clubbing of fingers
-crackling in left lower lobe
-evidence of pansinusitis on sinus xray
-EOS% high, RDW Value low, MONOS% high, complete RAST high on everything but shrimp and pork, CH50 normal, ANA normal, ANCA and P-ANCA normal, Tetanus AB and Diptheria AB normal, IgM Low from 2 different blood studies, IgG and IgA low on one but normal on the second
-Sweat Chloride screening borderline at 60, 46 mutation panel negative, waiting on gene sequencing
-Alpha-1 testing: carrier MZ
I sent her records to Childrens Hospital in Houston, TX. They looked them over and wrote a letter stating that they believe she should be seen by National Jewish because they have a team combined of pulmonology, immunology, and psychology (she has medical procedure phobia) and they aren't sure whether her issues stem from a pulmonological or immunological standpoint. I called the lung line and was told that they don't usually see children especially with special needs such as that and we should go to a childrens hospital. Her pulmonary function studies are always normal and her pulse-oximetry is always good. There have been so cardiac studies done other than chest xray. We need answers, please.