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Haven't posted in quite sometime...wondering if anyone knows what happened to member name NoExcuses?

We use the NeilMed bottle (http://www.neilmed.com/usa/sinusrinse_isotonic.php). We chose this method of flushing because it's easy and the bottle can be sterlized. I have concerns about the Waterpik being adequately cleaned between uses...but I may be wrong. DD's RT suggested sinus rinses (she...

DS is 4.5 yrs old...we have five cats and two dogs. :)

DD has had clubbing since birth...she's too young for PFTs (4.5 yrs old), so I can't share clubbing in relation to dz stage. Hypoxia in her case cannot be the sole cause as it's been present since birth...there are others on this site that have had clubbing since childhood that have high...

Sarah - I totally agree with you. There can be great variation between centers. This was the case with DD and UCD compared to Sutter. Truly reactive vs. proactive approach.

I'd invest in a NeilMed flushing system. We use it for DD...the water is sterilized prior to use then you mix the water with a NeilMed packet. I don't know much about Simply Saline, but I think there is less concern for infection/contamination when using NeilMed....

Never was approved by insurance...actually, I think they covered around $1000. But - better than nothing! Crazy.

Good news!

Definitely pay attention to her stools as she gets older and starts to eat more varied foods. With respect to listening to your CF center - make sure you do your fair share of research. Ask questions here...you'll be surprised at how much variation there can be between centers. In the case of my...

Thank you.:)

Thanks for coming back. I, too, just learned of Vlad's passing. I didn't know he had become so ill. I had a difficult time visiting the forums after Mel passed away...she was someone I looked to when thinking of my daughter (diagnosed at birth). Looking forward to hearing more from you. Take care...

This was DD when she was young - strong gag reflex. She didn't get into solids until around 3 1/2 (and were still only at the snacking level). When ill, she occasionally coughs, gags, and vomits. It has subsided a lot from what it used to be. :)

Her XRAY essentially showed bronchitis...and "changes consistent with cystic fibrosis". Love when they add that last part. Her cough it pretty much nonexistent now....

Thanks everyone. The plan is to stop airway clearance for two days. Xray and culture ordered...rx'd Augmentin....

Thanks, Bill. Yes...stressing here. :)

DD coughed up a small amount of blood mixed with phlegm/foam. She seemed to be having a brochospasm at the time. This is our first time seeing blood with coughing. I've put calls into her nurse and doctor. Not sure how to proceed today. The spasm has stopped...thank God. However, I don't know...

I honestly cannot recall being advised either way - though we've always done it in the evening. IMO, PM treatment allows the med to sit and 'work' longer as we aren't as active while we sleep (i.e., less mucus expelled which would cause med loss if expelled with mucus - the mucus sits and thus...

We knew we were carriers but opted out of the amnio for our children. Our second child has CF and is also dd508. We have five cats and two dogs - there is absolutely no reason why you cannot have pets. The only reason would be due to allergies. If you maintain a clean household, bathe your dogs...

We use the boiled water from DD's neb parts...I wouldn't use saline as the salt packets (which are medical grade and sterile) alter the solution so that it's the ideal pH. Ideal pH (close to physiological pH, that is) takes away the stinging sensation. It might not make that much of a...

DD is four...she started using the Neilmed flush system about a week ago. I tried it first so I could set an example. :p Didn't feel like anything other than when pool water goes up your nose. She does it like it isn't a big deal...fortunately!