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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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    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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    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?

    My kids have both started Cayston over the last few months. Every time a new supply of Cayston is shipped, it comes with a new Altera handset. Am I supposed to use a new one every cycle? The old one still works perfectly, it seems so wasteful. Do you use a new one every cycle?
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    Do you use the PAri Vios neb compressor?

    My DD has one, my son has an Inspiration I think? Anyways, his compressor has outlasted 3 Pari Vios. After about 6 monhs they just seem to stop working. The filter is clean, we tried new hoses and such. It is taking her 3X as long as him to do the same meds. The output of air gets so weak, and...
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    PFT's are down for no real reason

    He My almost 8 YO son's PFT's have been down for the last couple of months, from in the 120's to around 100%. He is not having any symptoms of illness except for an occassional cold, and is not culturing anything new (he cultures PA or steno from time to time). The doctor put him on antibitoics...
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    the flu - question

    how long are you contagious with the flu? My sister came down with it a few days ago and her kids today. They are supposed to be visiting for Christmas. Is it the sort of thing where you are contagiouos for a couple days or are you contagious as long as you're showing symptoms? My kids got their...
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    Cayston just arrived! Yay!

    We tried out a dose, so incredibly fast!! And they sent us a sterilizer to go with it! I'm so excited, it's a little pathetic!
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    Eflow-Cayston-almost 4 year old?

    Our CF center is switching my 7 YO son from Tobi to Cayston. The paperwork takes some times so we haven't received anything yet. They would like me to try it with my almost 4 YO DD for a dose or two and see how she does, she also cultures PA and has a lot fo toruble with TOBI. It gives her a...
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    decreased lung function without exacerbation?

    DS(7) normally gets 115-120% on his PFT's. 3 weeks ago and again today he got 100%. The doctor says it's still 100%, but concerning to have such a big drop. He hasn't really been sick, not culturing anything new, no cough. He cultures PA and steno on and off and does Tobi, but hasn't had any...
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    How to clean/sterilize the acapella?

    My son used to have an a acapella choice (dark green), which is easily taken apart to wash/sterilize. It broke and they sent us an acapella (light blue). It does not appear to come apart. Is there some way to wash this thing or should I just call them up and have them send us another acapella...
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    Does your acapella ever give you trouble?

    My DS uses the acapella choice, I think. The dark green one that can be taken apart. Sometimes the piece inside won't flutter, the air just blows right through. There are no broken pieces, and I washed it, soaked it in vinegar, and then boiled it in case it was the chalky residue from boiling...
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    SSI question

    I was told by my childrens doctor that I should apply for SSI. We were denied several times a few years back, they say that although the children have a serious illness, they are not sick enough to be considered disabled. (Thankfully they are pretty healthy). An attorney suggested not going...
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    I saw an ad for the Pari eRapid on CFservices Pharmacy homepage. I was just wondering if anyone has any experience with it? It's supposed to really cut down treatment time, and it says "The eRapid® is suitable for all medications that have been approved for use and are available throughout the...
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    what to use to soothe irritated airways

    My DD does Tobi 28 days on/28 days off because she cultures PA. She has a large asthma component to her CF, and they say she has a pretty reactive airway. The TOBI irritates her horribly. She coughs a lot during and after Tobi treatments. We do albuterol and pulmicort right before Tobi. She is...
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    Now that VX770 is FDA approved...

    Now that it's through trials an FDA approved, does everyone with the G551D mutation go on it? For anyone who is on it or has a child on it, have you noticd any differences? My kids do not have the G551D mutation, they have DF508 and Q493X. When(if) VX-809 is approved for the DF508 mutation, are...
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    Tobi vs. Cayston

    <P>DD has been culturing PA for almost 2 years off and on. We currently do Tobi every other month. She has a really tough time with it. She coughs non-stop the entire treatment, and off and on for a little while after. She also has coughing at night on tobi months.</P> <P>We have tried...
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    shakey hands?

    My son is 5 and seems to have slightly shakey hands when trying to do something like writing. His teacher mentioned it to me last year, I was thinking maybe the duoneb? But she also mentioned it could just be some muscle weakness in the hands, so we do things to strenghten them, like cutting...
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    CT scan in place of yearly x-rays?

    At our last CF center appt, we were told they're no longer doing yearly x-rays on the kids, instead we will be doing CT scans every 2 years. Wondering if this is going on in anyone else's clinic? I'm happy because its more thorough, but I do have to say I'm a liyttle worried about all that extra...