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How's she doing? Hope she didn't pick up the bug.

http://www.sciencedirect.com/science/article/pii/S2352396415301109 cystemine is fda approved and available for another condition. While early on study, if nothing is working this might be worth a shot.

I'm wondering f orkambi s cleaning out his sinus? Hav they scanned those lately? Hope it goes well! Prayers

Yup! And kalydeco was only 50% cftr for 551 and many had near miraculous improvement from 50% cftr function even after decades of lung damage! So imagine 75%!!!

Vertex had a conference yesterday to discuss earnings. http://seekingalpha.com/article/3617286-vertex-pharmaceuticals-vrtx-jeffrey-m-leiden-on-q3-2015-results-earnings-call-transcript That is the transcript. Note: This was held for investors but it is public so anyone can hear. I've been...

I thought I read somewhere a certain amount of time when off the enzymes before testing the stool??? How long did they wait? Maybe some googling on that issue to see if the text wasn't accurate? I'd also call the doctor and explain and see her thoughts.

I am so sorry. That has to be so hard. I'm wondering if it might make sense this time to say no, and kinda use it as a teaching moment to DD. We know they come first and that no matter how inconvenient getting called away from work, we're mom and we're there??? Good luck and hopefully it...

I'm sure it doesn't feel like it now, but your son is one of the "lucky" cfers...as it appears that second mutation is a residual function one. I believe the legacy name is 3272-26A which means it is being studied for a combo to fix the cftr...

jamest, Thanks so much. That is good to know. When you talk about the clearance, do you mean the vest etc? The reason I ask is that I'd say even if you aren't brining up anything keep doing. With young CFers there's nothing to bring up yet but it helps anyway to keep them healthy. Re the...

So been researching toothpaste brands and wonder if anyone had any input from the dentist or CF doctor related to CF issues? For instance the ingredient triclosan which inhibits bacterial growth but some studies indicate could make resistant to bacteria? What about baking soda once (for a...

Just bumping you in case others can give you a play by play of what to expect first time in hospital.

I think that's fairly common now ...they have to do in hospital first I think to get the antibiotic levels right before releasing from home....also maybe check out the recent thread re eclipse balls or something that makes home antibiotics easier. And thanks for note,..more later...

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=938302 this is huge! I've mentioned before out crisp and gene splicing and that they are working with vertex will get t den much faster I think because vertex knows the gene aspect and has the assay to test...likely ten years out but closer...

, well...his fessing up included "next time I shouldn't show mom!" But I agree re making it fun...we do practice sentences which all include something to do wth angry birds or bad piggies...his stuffed animals take turns being teacher...and I he.p with ideas on how to remember...I was afraid...

Mom, I am so sorry what you are facing. I doubt that the retest would show up as borderline and frankly if it did I would still want them to treat for CF. But with the lower Sweat # (still definitely positive but lower range) and that he is pancreatic sufficient, it likely means he has a...

So I homeschool, DS who is 6. He had his weekly spelling test this am and I suggested during his morning homework period he might want to review his words he said no, he didn't need to. I got everything ready and then had to do something in the kitchen and said you can take another look at the...

Since the endo thought of it I'd have him order a blood test (see if he can do as many mutations as possible...likely they won't do all 2000 to start but if they do the 100 test and hit one then you'll be more likely to be able to get full testing. And have him order sweat test at accredited...

I'm so sorry; I can't answer that as our son doesn't have a CF cough. At this point, I know its easier said then done, but I would look at it as this might explain everything or it will be good to get this ruled out. There are many on here who were diagnosed much later than 14 (20, 30, 40) and...

There is enough there to strongly push for a referral to an accredited cf center and a sweat test and genetic test. Id call the doctors tomorrow to get the ball rolling. If it is cf he has always had it and will now be treated properly and grow and be much healthier. And if t isn't they can...

When I saw the packet with the punch out pills, I literally exhaled, whew...as I'm very clumpsy and have already foreseen me knocking the car, I mean bottle of pills in the drain!! Looking forward to your blog!