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jricci, Thanks so much for the gracious note. One thing I want to clarify though is that the 661 study for residual functions still looks likes its mutation based and it only has about 3 more mutations than the filing with the FDA. I greatly fear that the approval will then not reach the...

First, I want to say I'm very sorry if my excitement on the filing came of as unkind for those that don't benefit. The reason I was absolutely thrilled was that this wasn't suppose to happen for anyone now. NEVER had there been a hint that after the Denver nof1 Phase 2 the FDA might approve...

I think that if it is really salty that would be an indicator of CF; but that if it isn't to you that may or may not show what the sweat test shows. Maybe others who have had positive ones with their little ones can chime in? DS is noticeably salty and he also had a off the charts 133 for his...

Hey Mom, I'm so sorry for all the worry you are going through. I know there are several here who have CF who did not have a positive sweat test, but most Center's still consider it the gold standard. I'm wondering if your insurance would cover a smaller gene test to start, in which case if you...

Oh Carol, I am so very very sorry. I just saw this. We will definitely pray and you tell Connor to let me know what "stories" and "adventures" to have waiting for him...we'll write some ahead of time so they are ready for him when he has to go in. Just ask him who he wants in it (pig minions...

Updated Report: Successful boil! So I followed Gammaw's awesome instructions re the boiling. I prefer though to take the valve and plastic off and I put that through the dishwasher with the end plastic. I run a load separate for nebulizers and put it in a basket for that. The chamber I...

Yes, please do post. And thank you for all who have provided updates. It helps a lot in so many ways!!

I absolutely agree with Stephen and think all class 3-5 should be on Kalydeco off label, but getting doctors on board and then insurance companies for some has been insurmountable. Re the FDA filing: It is actually very rare to go to the FDA without clinical results, but with CF and the safe...

A few ideas. First, I can totally related to that discomfort. DS has CF but I have GI issues and years ago a GI scripted it for me for regular use and I was more miserable. I tried again about a month ago and same thing. DS on the other hand does 3 doses as maintaince and since moving to...

Hey Gammaw, Just to clarify: What do you mean whey they say the triple combo includes all df508 heterozygotes? What I had understood was that the goal is for the triple to be used for all df508 heterozygotes and Kalydeco for those with 551 or gating or residual function but not df508 on the...

rubyroselee: Thanks for sharing. The sinus improvement intrigues me because I know a mom whose dd uses Kalydeco off label with a class 1 + df508 and she has had VAST improvement in sinus, even though it isn't suppose to work. Makes me think the cftr disfunction for sinus is either improved...

Amy: How absolutely bizzare. Thanks for sharing. I'm so baffled by that! Augh. But yes, I'd love to hear any other changes you noticed too.

I didn't. I will follow up but want to first try Gammaw's boiling technique. It took the lady a bit to hear about the safe to boil last time. And I figure this question might be too (as she did call me back and was extremely helpful). I will definitely report back.

That's so weird...It's been "normal" from my end...Glad you're back though!

Thanks gamma with...actually taking the valve off is easier on my hands because I toss it all I n dishwasher but chamber and t s twice as fast to rinse the chamber without trying to get the valve area properly rinsed...it just rinses through the chamber and the quarter sized opening. Having...

Re the digestive issue: I think some have had some positive improvement and also the weight gain would indicate it must be doing something GI wise. One thing I'm definitely going to do is a photo journey with DS's hands because it is so severe and I think it will be so amazing if I can capture...

Ps dh says we don't have hard water but I had put the spacer on the bottom shelf and he said t looked like a chemical faction. When I did it next time on the top shelf s farther away from the detergent the results we not nearly as bad...but still affected the coating. So me to try a hand...

Thanks Gammaw. I'm going to give it another shot boiling with handwashing. Also, fyi: I have popped the top parts off very easily to get the valve boiled and dried separately and it is pretty easy...well, it is because I put those through the dishwasher before the boil with the nebs. (I do...

I think several have had gi issues with the start up but then they subside and gi issues improve. He LNG have you been on?

I know I'm tracking carefully what people are saying about Orkambi and specifically the FEV improvement. The Vertex conference noted one of the presentations at the NACFC which showed that there was no correlation between the FEV improvement at a specific point and reduced excerbations. In...