Daughter has PCD- Primary Ciliary Dyskinesia

I recently posted a thread about my 7 year old daughter. She has symptoms of CF but very low sweat test results. One of you nice people posted about PCD- and that is exactly what the Pulmo Dr thinks she has. Everything that is written about PCD relates it to CF and says the treatment is identical and problems are similar- just caused by different disease. No wonder it was so confusing! She's have CT of lungs next week, along with bronchoscopy. We're starting the acapella device today. Saline breathing treatments. Continued treatment for asthma- although at the moment the immunologist and pulmonologist think she may not even have asthma. The diagnosis today was preliminary. There is still some question as to her immunity because she's not showing immunity to certain imunizations that should be responsive. So there could be some underlying immunodeficiency going on in addition to the possible PCD. They will do genetic testing on her in December. And interestingly, some of the faulty genes for PCD are the same as for CF! I'm going back and forth between being excited at getting a possible diagnosis finally and crying because my baby really is sick. I kept secretly hoping the doctor would tell me she was fine and I was just overly worried. I feel vindicated that my gut was right- and devestated to know she's very sick and it will never be gone. I really appreciate this forum and those who've posted.
Source: Cystic Fibrosis Newly Diagnosed Forum - Category: Respiratory Medicine Authors: Tags: Newly Diagnosed Source Type: forums