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Type: Posts; User: SarahProcter

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    I would assume that it is to check how well it...

    I would assume that it is to check how well it works for you. Before my daughter started Kalydeco her sweat test #s were in the "definitely CF" range, and after taking Kalydeco, went down into the...
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    Very odd, I agree. One possibility: for...

    Very odd, I agree. One possibility: for efficiency's sake, sometimes DNA testing is done in two or more phases - for example, the cheaper test to look for the 25 most common mutations, followed by...
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    Insurance is a good reason to sweat test before...

    Insurance is a good reason to sweat test before and after. A significant drop in sweat test values supports the argument that it is an effective treatment that should not be discontinued if the...
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    Totally get a sweat test. It proves it's working....

    Totally get a sweat test. It proves it's working. My daughter is so healthy she didn't feel different.
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    Jeannie85: definitely do sweat tests before and...

    Jeannie85: definitely do sweat tests before and after starting ivacaftor (4-8 weeks after). You should also do blood work to get baseline values for liver function and pancreatic function (amylase,...
  6. You need full genetic sequencing done, sorry. ...

    You need full genetic sequencing done, sorry.

    My kid, who definitely has CF, had sweat tests in the 50s and indeed in the 40s and below when younger. A 53 means you should get a full genetic...
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    For some. Still not approved for every one it...

    For some. Still not approved for every one it works for.
  8. Hi Dave, I'm replying here because jricci...

    Hi Dave,

    I'm replying here because jricci tagged me on the other thread (thank you, jricci!)

    Yes, my daughter is taking Kalydeco off-label covered by insurance. It brought her sweat test down...
  9. Jricci, that looks like the one. Her doctor who...

    Jricci, that looks like the one. Her doctor who did the nasal scraping and in vitro testing is one of the authors on the paper. Very interesting to see that Kalydeco can make things *worse* for some...
  10. I do not. I have the IRB paperwork around here...

    I do not. I have the IRB paperwork around here somewhere, or if I can't find the name there, I can ask at clinic.
  11. Thanks for your thoughts, guys. For now, we're...

    Thanks for your thoughts, guys. For now, we're staying the course with her current treatments, but it's almost two hours a day, every day, which I know we completely don't get to complain about since...
  12. So, if ivacaftor "works", what does that actually mean?

    I apologize in advance for how incoherent this question is.

    My daughter is taking ivacaftor. In vitro tests indicated that it would work for her mutations. Once on it, her sweat test went down to...
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