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    CFTR modulation for those with ONE copy of DDF508?

    Mine too. DF508 and Q493X. Are any of these drugs or drug combos currently in trials expected to help?
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    colistin, what a pain in the butt

    Thanks guys! Just to be clear, once mixed it needs to be refrigerated, but un-mixed does not? You've been very helpful, and made it a bit less of a pain in the butt :)
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    colistin, what a pain in the butt

    thanks Stephen, that's a good idea! Right now they have me mixing 4 ml of saline into the Colisitin powder and then my DD has to neb half of it. I'm wondering if I can save the other half for the next treatment. I'll see about getting it pre-mixed as well
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    colistin, what a pain in the butt

    my dd just started this week. What a pain with the syringes and mixing! And it gets so bubbly I have to wait for it to settle. Can I just mix up all the bottles in the morning or do I have to mix them just prior to nebbing? Anyone know?
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    broke wire part of Altera neb for Cayston

    Hi guys. I accidentally snapped off the gray plastic tab on the wire part that connects the neb to the base. We get Cayston and the nebs through CF services pharmacy, and get a new neb with every order, but we've never needed a replacement wire. Do we get that through cf services pharm too...
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    Hyperinflated lungs?

    I think you'll know more when they do another PFT after he is off the abx and steroids. His numbers may dip back down. I think you'd expect them to be good when on steroids and antibiotics but if there is still an issue they'll drop again
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    Getting cut with opening Cayston

    thank you! Thanks for this! I have been prying them open with a knife, and have slipped a few times and sliced my finger. I never thought to twist the cap! It makes the tab pop up just enough for me to grab it. No more slicing my knuckle :)
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    lip cuts

    ugh. This happens to my DS (8) all the time. I have read that it can be caused from yeast. I personally believe its from the inhalers, because I know they can cause thrush. It just keeps coming back over and over. It will clear for months and then come back. We have tried medicated chapstick...
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    Sterilizing with an Avent steam sterilizer

    Ok, so the respiratory therapist told me not to use it because there is some concern over whether it is hot enough long enough to kill bacteria, or if the process is actually helping them grow. She told me to either A: boil all parts in distilled water, B: boil all parts in tap water but soak...
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    Sterilizing with an Avent steam sterilizer

    Hi, I haven't been on in a while so forgive me if you've already discussed this. I heard we are not supposed to use the Avent sterilizers anymore that we got when the kids started Cayston. Something about FDA approval? She actually said to throw it away. Honestly I only talked with the doctor...
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    Bounce House

    I don't see why not! It's really great for their lungs. Maybe just use some hand sani after if you are concerned. My kids have been in many!
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    Males with CF: who has their vas deferens?

    fel, I'm wondering how they were tested to see if they have their vas deferens, and their ages? It's something I always have in the back of my mind when my DS says something like, "When I'm a dad someday..."
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    Constant Sinus Infection

    hopefully the new ENT can give you some answers but my kids have some sinus issues so maybe I can help a little in the meantime. Do you do nebs with masks so the medicine will get into his nose as well? My kids ENT said to do nasal spray and blow their nose lots, like 5-6 times a day. We tried...
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    Sun Sensitivity

    Although I don't have CF, I have polymorphous light eruption. It's always worse at the beginning of the year when I first pull out the short sleeved shirts. I only ever get it on my forearms and back of my neck. My skin seems to get more used to the sun as the summer goes on and it happens less...
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    prednisolone, red cheeks

    My DD was put on oral prednisone a couple of days ago for 5 days. She has been on it quite a few times before (she has a large asthma component to her CF and a pretty reactive airway). This time she has flushed red cheeks. I was reading online and see that this can be a side effect, but I'm...
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    Cayston- new Altera handset every cycle?

    hmm, that's a good idea. I am currently rinsing after every use and sterilizing at night
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    Cayston- new Altera handset every cycle?

    thanks, I hadn't heard of it.
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    What do I give her for allergies?

    our doctor also told us to use zyrtec (ceterizine) and frequent nasal saline rinses or sprays
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    Cayston- new Altera handset every cycle?

    What do you use the Trio for? just curious.
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    Cayston- new Altera handset every cycle?

    Yay! It was such a relief for the kids to switch from tobi to cayston, 20+ minutes vs. 2-3 minutes. I guess I'll use each for three cycles or until it starts taking longer than 3 minutes. I'm going to have a lot of back-ups!