My world has been rocked. Way too long of a story to repost but short summery.. My kids were diagnosed with atypical CF last spring. All of the standard CF tests were in the grey area. Borderline sweats(49,50, and in the 20's.) All three have two copies of M470V which is considered non disease causing. Deletion testing not done yet. Have had all classic cf issues from birth but b/c my 11 year old had a sweat of 12 at 2 months Cf was not looked at again. Because of the way the dx went down I have been able to stay in a "safe" world of denial that "maybe it really isn't cf". My daughter's sinus disease is back(sinus surgery done last June)and ct scan shows bronchectasis in her lungs. The Dr's were very surprised at the condition of lungs. She has been on Bactrium, pulmozyme, albuterol,singulair, flovent and the vest and they were still bad. She is now on IV antibiotics for a few weeks and I can no longer live in my "safe world". I can't get the words "she has classic cf lungs" out of my head. Bottom line is there is so much we don't know about this stupid disease and it's presentations and b/c of this my daughter at 7 has permanent damage.Her GI issues are all being evaluated b/c digestion wise she is not under control. She is at the bottom of the curve and has already lost weight being here. I just don't want to believe any of this.