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Cystic Fibrosis Message Board


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[QUOTE=lovemyangel]At three years old my daughter was sent to a pulmonologist because she was constantly sick and was the exact same weight for over a year. He suspected asthma but sent her for a sweat test as a precaution. She scored a 59. They redid the sweat test and again she scored a 59. The doctor told us that she had CF and that we would talk about a treatment plan when the genetic test came back. Well, when this came back it showed no known mutations. The doctor basically said "oops, I was wrong," tied a balloon to her wrist and sent us on our way, which we were more than thrilled about.

Now my daughter is 8. She still shows asthma symptoms except now she coughs all the time instead of just some of the time. Her weight is basically normal (just a little small for her age) but after what seemed like one illness after another over the past few months her ped sent her to a different doctor for CF testing again.

On our first appointment this doctor told us that he was going to diagnose her with CF even if Ambry Genetics could not find any gene mutations. After all the tests came back he would sent her to John Hopkins in Baltimore for a Nasal Potential Difference test if necessary to solidify his diagnosis. A week later he called us to say that they had found Pseudenoma Aeruginosa in her sputem test which further proved his diagnosis.

Now, the dna has once again come back negative so the doctor redid the sweat test which is now a 26! He has changed his diagnosis and is not sending her for the NPD. As much as I would love to believe that she does not have CF can I really trust this diagnosis? I thought that a person's sweat test score stayed pretty consistent thoughout their life so how did hers drop from a 59 to a 26? And what about this potentially deadly bacteria that has taken up residence in her lungs?[/QUOTE]

That's really interesting. A 59 on the sweat test is considered about borderline (I think over 60 is a definite diagnosis). A 26 I think is normal!

Pseudomonas aeruginosa is a common pathogen in the sputum of CF patients, however, other diseases can cause Pseudomonas colonization in the lungs, like primary ciliary dykinesia, bronchiectasis and certain immune deficiencies. The next time you see the doctor, ask about getting a full immunoglobulin workup (that's if she hasn't had one already). If worse comes to worse, she could get a bronchoscopy with biopsies done to rule out primary ciliary dykinesia. But before this, they might decide to do a lung CT scan to see if they find any bronchiectasis.

Your daughter should also get a pulmonary function test done.





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