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Thanks for the response! I am actually sitting in a clinic hoping to not have strep throat, more for Owen's sake than my own, but I am sure you know how that goes!
unfortunately, we have been to both Mayo and the U of M. Mayo did not do gene testing for1400 mutations, only around 70-200. They were the ones who suggested CF but then when his sweat test was only 38, they did not think it would be worth the extra tests. Honestly, when I asked about the variants, the CF nurse said I was "grasping at straws" so we tried the U. His test there gave an 18 value so we didn't even get to talk to genetics or any other docs there.
His digestion is far worse than his lungs are. He cannot digest and absorb food without either Creon or having total amino acid based diet. His hair and teeth show how malnurished he has been. Sad. Looking back, he had shown signs of problems as an infant (vomiting, diarrhea, blood in stools and multiple RSV infections with O2 sat rates of 74) but it wasn't until just two years ago that we qualified him as being "sick." He lost 14 pounds before he had his g-tube placed.
I am going to figure out how to ask for the nasal tests. That makes a lot of sense and even if we never get a dx, I want to know we are treating him as well as we can. Thanks for that suggestion.
Anyway, I didn't mean to hijack this thread, just to communicate that there are lots of us out there and that when you hear of low sweat tests but positive CF, there is a bit more concern about the unknown....





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