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PS Rebjane so sorry daughter got hit back to back , double wammy PLUS not having her doctor to run things by just adds to stress. Hugs and prayers for her. And sounds li\ke Gammaw's guy too just got off one. Augh. Ditto to you. Than\ks again both.

Thanks both. This is our first lung involvement , so while I'm a pro at the GI sh!t literally as DS would say I'm at a lose on the cough stuff. He is definitely SO much better than Saturday when we were packing for the hospital and things turned around, but still nasty cough. What I don't...

Under "normal" circumstances, how long does it take to return to "baseline" for a kiddo with a cold and doctor hearing something in one lung lobe? DS started antibiotics 2 days ago for 21 day course. Pretty sure he caught my cold which I caught from DH. DH was bac\k to his normal in days...

DS nose has been running so much and blown so much the inside is raw and when he blows he is in excruiating pain and little spots of blood. Is there a prescription med they give tohelp? Vaseline? (Safe for CF in nose?) Other suggestions? Thanks in advance all on this and other post..

Yeah, DS is sick of the iPad ...we have those...this is to have family time by playing together as oppose to just watching. DS cold turned into an infection in his right lobe and having hell of time with meds, getting fluids down, and now getting backed up! Prayers appreciated!

With one df508 the next generation triple should work. They have three drugs in early trials. Two phase two and one phase one. Here's one example. https://clinicaltrials.gov/ct2/show/NCT02951182?term=Vertex+cystic+fibrosis&rank=20 search clinicaltrials.gov for vertex cystic fibrosis and look for...

Thanks all! We decided on the new Nintendo system which b/c the wii stuff seemed more appropriate. Bestbuy was out and then the guy checked "omg we just got some," goes to back and then manager said can't sell them b/c they are doing some big promo to announce "we just got more". Augh.

DS finally got us fa rest cold and we are having a hard time getting the extra vests done because he feels so bad while doing so going to try to get a gaming system for tv that will help psh through. Doesn't have to be latest and greatest but ideally one two or more can play together and that...

Ohhh...tied between mint and hair burning. Best Smell: My son. The day after a bath, on the top of his head....like a bottle of Xanax.

No and no...unfortunately, but I'd think whatever the initial filing was for because vertex is building on that and not filing a new one. Also on thinking more I bet FDA does move soon..it couldn't before this was public and now that it is makes no sense to wait!

So listened (as best as possible while doing morning treatments with DS and playing Angry Birds Epic with him! The key for the residual functions: Vertex has ALREADY provided this information to the FDA as part of its prior request to approve Kalydeco for residual functions. And they...

results look good, hopefully fda will ok kalydeco for residual function in meantime. http://investors.vrtx.com/releases.cfm?hdr02=press

I'm sorry if I missed it, but one thought I had: If the ER started your son on an antibiotic, you should make sure to cross check with the CF clinic b/c they usually give higher/longer doses for antibiotics and also will want to make sure it is one to work on whatever he cultured. Our...

I'm so sorry for all you are facing. I'd second Ratotsk's comment that your daughter was likely tested only for 200 gene mutations. If the test came back within 2 weeks, then i'd say that's a definite. So I'd follow up ASAP to find out how many mutations she was tested for and if not the...

https://www.fda.gov/Drugs/DrugSafety/ucm546154.htm?source=govdelivery&utm_medium=email&utm_source=govdelivery

Our son who had dios when around 1 year old does 3.5-4 caps of miralax daily plus 9 ml of milk of magn. daily. and he doesnt get trigger foods which always cause problems, ie texas toast and string cheese. He also does Zantac/Prilosac and culturelle. It took us about 4 years of experimenting...

Maybe I missed it, but your daughter have a sweat test at a certified center? I'd start there while you wait the results on genetic tests.

Do you work with a facility with 15 or more employees and more than one PT? If so, I'd suggest working with the HR department to obtain a reasonable accommodation to avoid contact with them. If not, then I'd get some masks, Purell, and hospital grade wipes for after.

That has to be frustrating! If you work at a center with more than 15 employees I'd suggest contacting HR about a reasonable accommodation to avoid contact with sick patients. If not wanting to do that, I'd just wear an N95 mask, Purell after and use hospital grade wipes. Good luck.

I agree. If they won't do the CF diagnosis, maybe come at it from the angle, well we don't need a diagnosis, we need treatment whatever you call it, his body isn't working properly and then attack as Ratatosk said above.