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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index



Hi Chacha,
How are you? How is your daughter doing is she doing any better? I hope so. I'm so upset and I don't know what to do. From everything I know and have read, a genetic test of negative can't rule out cf definitively because it can't test for all 6oo mutations. Therefore, since my son's test only tested for 100 how can you say especially since he's still having syptoms that he doesn't have this horrible disease? You can't. But his new doctor just brushes off and delegates responsibility to his pediatrician.
He did agree that such genetic tests as previously mentioned, aren't 100% conclusive. However,when I suggested a pulmonologist at the cf center, he tried to discourage me saying my son didn't have any more symptoms. There is nothing more truthful than I hope my son is okay and he's right. But 2 borderline sweat tests, one genetic test that's negative, can't rule it out especially because he has symptoms that don't get better. His new doctor said it would be okay to see a pulm. but he doesn't give referrals. He's very friendly with one of the doctors who is but I'm a little suspicious of going to her if he's so friendly with her. I just want to know conclusively he doesn't have this disease, not even an obscure mutation they can't find. I feel like everyone is protecting his first doctor. Also the only reason he doesn't think my son has it: because he looks too good-another reason doctors misdiagnose this disease. I'm thinking about switching hospitals. The ADEKS has helped his blood work-one very positive thing. Let me know what you think and I sincerely hope your daughter is better!
susan





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