Re: Vickie

[Guest guest]

Barbara,

Yes, she was diagnosed with bronchiectasis this last spring. They almost removed her middle lung lobe, I took her to to St.Louis Children's Hospital for a second opinion. They told me that bronchiectasis are ALWAYS a result of something else going on. I always thought that she had bad asthma, and allergies, based upon all of the testing she has been through, however, we went thru one more round of grueling testing this summer. It also happened that Washington University School of Medicine in St.Louis, was chosen as one of (5) centers for a PCD-Primary Cillia Dyskinesia study. Besides that biopsy, they also tested her for Aspergillious( ? spelling) ABPA (allergic Bronch Pulmonary) various Immunological tests and her 5th Cystic Fibrosis test-(3 sweat Chloride tests all of which were normal) 1-97 panel screen and then the genetic 1400 panel) When I asked why the CF test again, they said the sweat chloride was not always accurate. All of those tests came back negative, But finally on Tuesday of this week, we found out she has PCD, she had been tested for that at age 7. It had come back negative then. It really irritates me that these tests need to be done multiple times and if a diagnosis had been made when she was 7 perhaps we wouldn't be dealing with the additional problem of bronchiectasis, so do not leave any stone unturned, and if you still keep getting sick and do not have answers keep revisiting something that you thought might be negative. The testing gets better all of the time......and it might take several times to get an answer......Very frustrating, I know from personal experience. Good luck and Good health to you, Vickie