just a question

my 15 daughter developed a nasal obstruction, had septoplasty and the doctor reported that my daughter had the worst adhesions he had ever seen. Within 2 months the adhesions were back, she developed a saddle nose, and she was snoring again. The lining of her nose is lined with sores and bleeds everyday, and she coughs all of the time. My daughter was sent to a Rhinologist who took one look at the lining, said it was allergies and she needed reconstruction. We were sent down the hall to plastics where the doctor took one look at her nose and said that he felt like she had a vasculitis called Wegeners Granulomatosis. She went through the gammit of testing and she was tested for every autoimmune disease there is. My daughter came back ANCA positive so they kept trying to get a positive nasal biopsy so we could diagnose the Wegeners. Every biopsy we have done has had staph of one kind or another so the ENT felt like she had an infection, she went on antibiotic after antibiotic to "reset" her immune system. We went to Mayo to the Pediatric rheumatologist and the Pediatric ENT and they were convinced that we were on the right track and that we just had to get a nasal biopsy that showed vasculitis to prove she has Wegeners. The nasal biopsies showed bacteria so we went on antibiotics again. She has a cough also that the doctors didn't really address trying to get the biopsy and everyone kept telling us that when the lining of the nose doesn't work the fluid has to go ...
Source: Cystic Fibrosis Newly Diagnosed Forum - Category: Respiratory Medicine Authors: Tags: Newly Diagnosed Source Type: forums