Recent content by SarahProcter

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 "normal" range. I assume that even though you're not going from zero drugs -> Symdeko, it's the...

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 full genetic sequencing (which is more expensive, takes longer, and requires a specialty lab) if...

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 insurance company later wants to trim costs. For people clearly covered on-label that may not be...

Totally get a sweat test. It proves it's working. My daughter is so healthy she didn't feel different.

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, lipase). My daughter started at 7 in a similar situation - very healthy so no dramatic difference...

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 sequencing test done (not a panel!) and you should go consult with a certified CF center, not just an ENT.

For some. Still not approved for every one it works for.

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 to NORMAL. She tolerates it absolutely fine - no increase in her liver numbers, no perceived side...

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 mutations! My kiddo seems to be on the far end of lucky as far as how significant a positive...

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.

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 others have to do much more, but still... If they're unnecessary it seems like a lot of life to...

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 22 from >60. So, this seems to indicate that "it works" for her. My question now is, what does...

Dear Kerry, A couple years ago, you replied to a post of mine regarding S1159P mutation. I wanted to let you know something important: my daughter, who is delta F508 + S1159P, is taking Kalydeco now. It brought her sweat test results down to 22! If your sons are having significant disease...