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Aha. I suspected as much. But don't ya just wonder what that difference actually is!

I see. It does seem that poorly taken films is a common problem and are often compounded by less than accurate readings by radiology. That does make it difficult! Thanks for the clarification. We do always have films taken at the children's hospital where the CF Center resides. So hopefully...

So Ratatosk, are you saying that the x-rays were read incorrectly by your local docs? And in fact there was no air trapping, etc.? Or are we just saying that what they saw was normal for a CFer? Should CF lungs normally look different than average?

Every year our CF Clinic does chest x rays. That certainly seems prudent and necessary given the obvious nature of CF as predominantly a lung disease. But. I never hear the results or see them. Except when I ask I'm told "no change." Now I assume that's the goal, rather than seeing changes...

Yup. TPN fried DS's liver too. Been on ursodial ever since and gallbladder removed!

Yup. CF gallbladders tend to turn bad quickly. And a bad gallbladder is dang painful. Make sure they're looking at it as a possible source of pain and other issues and I wouldn't hesitate to yank it out!

My son had his gallbladder removed when he was only 1 day old, during another surgery. He already had a gallstone and the surgeon said he might as well take it out now, since it would have to come out eventually! Gallstones are very painful but pretty easy to detect. Did they X-ray? The CF...

Well, I really have to update the scouting saga here. Perhaps I'm the only parent who ever worried about this, but that wouldn't surprise me. My Scout has now spent an entire week in the wild - well, not quite so wild. The Boy Scout Camp here is huge and remote, but it does have a number of...

That's amazing Momto2! No infection for over 10 years. You should be telling us all how you do it. Do you think throwing them out so frequently is one of the reasons? One of the recommended methods is to disinfect the cups in a dishwasher that gets above 158 degrees - perhaps that's what you...

Well, we're post sinus surgery no. 4 on our 10 year old. We had them every year starting 2011, but went two years between the last two. After both of the last two surgeries, they inserted Propel implants - which are little bird cage type things infused with steroids to help prevent scar tissue...

Nice slides, Ethan Here's a thread with a succinct rendition of the steps to disinfect that I posted previously. http://forum.cysticfibrosis.com/threads/103016-Updated-Nebulizer-Cleaning-Guidelines-and-General-Infection-Control?highlight=disinfect+nebulizer

ImportedMomto2 - why do you throw them out after about 6 weeks? What cup are you using? The only reason I can see throwing them out at 6 weeks is if they are DISPOSABLES. Disposables are only good for one use - or perhaps a full day of use, but that would be it. There is not reason you should...

We never use same cup for xopenex and tobi. TOBI cannot be mixed with anything. So we too have about 8 cups, 4 for xopenex unmarked and 4 for Tobi marked with a "T" using a sharpie pen. Rinse each after use, then wash with kitchen soap and water in a plastic bin, rinse, boil for at least 5...

You never mentioned where her PFT's are - what are her numbers? It would help give us perspective. I can't imagine not vesting at least twice a day. Twice a day is our normal. When my little guy is ill, we vest every 4 hours with nebulized xopenex (a modified version of albuterol). He used...

I hadn't heard that before.....tasting salt. How interesting. It sounds like you're doing so well!

And to top it off. . . . it appears to me that there has been an absolute explosion of research using the Vertex model and their research as well as new ideas and insights to treat and cure CF spawned by the attention and methods used, just the encouragement that treatment and cures are...

Looks like AboveAll and I have jumped on this simultaneously. We seem to do that a lot. . . . Nice job AboveAll.

I have now read both articles. And there you succinctly have the debate. So I will chime in my two cents. I know of no other rare disease of such seriousness and complexity that has enjoyed as much publicity, investigation and advances as cystic fibrosis in such a short time period. Our...

Wonderful! Any bleeding?

I know I'm also concerned how my currently-getting-bigger-little-guy will deal with people, potential girlfriends, who are worried about getting involved with him because he has CF. But I've come to really believe that if you want a real marriage, those who can't deal with CF now are people you...