OP here. To Laura, 2 of my 3 children have been tested for immune defs. In youngest ds, they found elevated IgE (indicator of allergies) and his body failed to make antibodies from the prevnar vaccine but after revaccinating with pneumovax, everything was fine. DD they only found very highly elevated IgE (common in allergic children with eczema). Our official dx is asthma for all 3 which does fit with the family history but all 3 are somewhat atypical. Oldest ds has lower lung function (FEV1 hovers around 80% but lower airways are never above 65%) and has NO reversibility with albuterol, xopenex, or maxair (only bronchodilators tested) and only minimal improvement with inhaled steroids. He does have more improvement with prednisone. He has chronic daily headaches, had recurring strep plus frequently grew out "odd" bacteria on throat cultures but has now had tonsils/adenoids removed. He does not have sinusitis. He also has IBS. Youngest ds is barely on the growth charts (44# at 8 yrs). His weight is a major struggle. He is also asthmatic but usually has really high lung function - over 120% except when really sick. He has a long history of ear infections and chronic sinusitis. When he had his sinus surgery, the ENT (treats many cf patients) said he didn't care if ds's sweat test was neg, he sincerely thought ds looked like a classic cf case to him. His sweat test was 9 and was at an accredited center. He was tested through genzyme and found no mutations. Insurance won't cover an extended panel since his sweat test and genzyme test were both negative. Both boys have mildly clubbed fingers and toes (NOT genetic since NO ONE in our family has clubbed fingers). DD also has asthma and had recurring pneumonia (5 times in 13 months) and ear infections. Her asthma is atypical in that it frequently presents with crackling and she's never had a "normal" or clear x-ray. She has, however, been much healthier in the past 1-1/2 yrs and we haven't heard any crackling during that time. She is fine on growth but has chronic constipation and we have to use miralax or she'll get backed up and need enemas. Her sweat test was also performed at an accredited center and was a low negative (10). Even though the pulmonologists (who by the way are affiliated with a cf clinic) consider my children "just" atypical asthmatics with a myriad of other issues, like you, I find it hard not to lurk here. Partly because it took so long to "rule out" cf (1-1/2 yrs from ds's sweat test to genetic test), partly because a close friend of mine lost his wife to cf many years ago, and partly because you can't ever truelly "rule out" cf although I know the probability is extremely small. I can't remember what ds's genetic test said - maybe 1/164,000??
Anyway, just wanted to say, I understand why you're drawn here since I am as well!
