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m thanks dot! That was extremely helpful as was knowing Teri's daughter always did 2x a day. Our doctor said it didn't matter....it it truly didn't I figure once and don but my gut told me it had to be better t do twice a day at lower doses and your explanation makes great sense

Thanks dot! No I don't wNt to switch to nebs for t t unless it is needed and dr never suggested. We do do airway clearance 2 a day but before the qvar...that he I thought they had us doing t but. Might have misunderstood...I do that a lot!

Ryan, That is such an AWESOME idea! I have no idea how it hadn't come up before...brilliant!! I hope your son is thriving. Hugs and prayers, Love

Hey, Sorry, I wasn't clear. DS is on Xopenex (leverbuterol) and we do nebulized. But he is on chronic use of Qvar and the doctor increased to 2 puffs 2x a day (it can't be nebulized) OR 2 puffs 1x a day of a higher dosing. So I'm trying to figure out if there is an advantage/disadvantage in...

So DS doctor wants to up his qvar or rather has. She gave us the choice of a higher dose 1 a day or same dose 2 a day. I asked adv and disadvantages and whether better to do 2 a day which seems intuitively like t would be better but she said it s no different. Bu what I wonder is is that a...

DJ i just tested and the blog thing s so simple...as gamma with said just click blogs and new post. The advantage of the blog for the summary is that your summary stays all together and comments all show at the end. And I believe folks can just go to your blog to read all the entries...

Just seeing how this works

Wishing yu the best luck! Any chance I can beg you into copying and pasting your updates here in either e new thread or a blog? I'm sure there are others like me that can't keep track of all the places they want to check and also might want to keep their emails private...and like you said...

Re the insurance renewal: I'd check in at least 2 weeks ahead for your next order and now with the doctor re the refill and prior approval so that you don't have any down time and have to relive that he!! month. Also, I recall someone posting here the suggestion of completing a quality of life...

Yes, I know the freak out. The CF center had us give DS salt before his sweat test so he'd sweat. He started having a coughing spell and since all we knew was he was "presumptively positive for CF" and hadn't seen the doctor yet, we rushed him to the ER. I wish they'd tell us that!!!

oh sweetheart, I know. I know. The pain will always be there and the worry, but it gets better. You get in a routine and what now seems so hard to do is second nature. DS was telling his new stuffed animal who was "talking" why he does his vest and all his medicines. He says it so...

I frankly forgot about the salt with everything else going on. You might want to call and ask if they would be comfortable with you waiting a few months so long as you aren't out in the hot weather for a long time. I breastfed but supplemented with a bottle and did put salt there when I could...

Dear Martina, I am so sorry to hear of your daughter's diagnosis. We learned of our son's diagnosis when he was a couple weeks old and I still painfully remember those early days. And our son's sweat test was 133, so I KNOW exactly the worries because it was so high. I specifically asked the...

Our DS is 6 and uses size 3 which is plenty big and compares with the adult size for the Philips mask that goes with their spacer. He takes after me and has a big head/face.

D you have an ob? How about asking your ob to run a pregnancy screen for more common cf mutations for both you and your husband. Most insurance cover that and then if one has a more common matting t might be easier to get little one tested more broadly.

"This panel ncludes THE cftr gene that is causative of cystic fibrosis". Ah....which ONE gene would that be honey? Not you the genetic counselor!

allegromedical.com has them $7.00 cheaper for size 3 and several bucks less fr other sizes...if you need any more.

Thank you for sharing! And ditto shay! Even the minor things are so wonderful to hear! And I bet it didn't feel minor to you, did it!?!?

Another company, Galapagos, is moving forward with a second generation one. Slide 11 for Vertex shows 4x improvement over the combo (661/Kalydeco), while this in vitro shows a 6x improvement over Orcambi (which has equivalent cftr improvement to 661/kalydeco). So many things coming...

I'm going to pm you. After morning rush. I have three things or rather four that we can do to figure out an approach.