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    mucoide PA second time

    Hi, My DD has cultured mucoide PA for the second time. THe first time was 1,5 years ago and since then she wsa clear. Our doctor said that they don't know whether it is the same bug coming back or a new one. Hs anyone had an experience of eliminating mucoid PA? I thought it was always the...
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    residual function & Kalydeco news

    Hi all, Does anyone has any news on the pilot study of Kalydeco and residual function mutations? On clinicaltrials.gov website it says completed and has results, but i have trouble deciphering the actual results. Maybe anyone had beteter luck? thanks
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    When did orals stop working for you

    Hi all, I have been wondering, at what age the orals stop working. I know it varies for everyone, but just to get an idea. Is it usually b/c of developped resistance or they just fail to work b/c of thick mucus or something? Thanks for your input.
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    Omeprazole for babies/small kids

    <P>Hi all,</P> <P>Thought I would share the info, even though i am not sure it is the same way in the US. My dd has been taking Omeprazole for reflux for 3 years now. She does not swallow capsules so i was just emptying the contents (the littles granules) into some food for her.</P> <P> </P>...
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    Starting preschool/school

    <P>My dd (3.5 y/o) will be starting preschool in a few days. While I realise that it is inevitable that she catches plenty of colds, I was wondering if I should still try to avoid people who are sick? We have been putting a lot of effort into it so far, but now I am asking myself whether I...
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    Probiotic

    <P>My dd has been on a probiotic for something like 2 years now, lately I have been giving her the brand that you store in the fridge. In spite of that she has been sick all winter and i did not really notice any changes on the GI side. Fast forward to this summer: could not find the brand i was...
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    Bathroom humidity

    we live in a relatively small one bathroom appartment. recently we had a major leak from neighbors above that pretty much flooded all the ceiling and the walls. all the wet paint was taken off the walls but it is still very humid, i can even smell it. and it will take weeks if not months for...
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    Air purifiers

    We have been using an air purifier with HEPA filter & carbon prefilter in our dd's room. I was considering putting antoher one in the bathroom since it has no windows and came across one that kills germs by heating air to 200°C. Has anybody heard of this? Is it safe for ppl w/cf?
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    How long before you/your child got colonized by PA

    Hi everybody, Just learned that my dd (3 y/o)has cultured PA again, allthough in small numbers. It is already the second time that she cultures it, the last time being when she was 18 m/o (also very light growth). So my question is how long does it take to get colonized, or more like what has...
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    antibiotics allergies

    It seems that my 2.5 y/o becomes allergic to one antibiotic after another. First Augmentin, she had several courses with no problems and then suddenly had a delayed allergic reaction 10 days into the course . And now the same thing seems to happen with Bactrim. The hospital already eliminated...
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    Second Opinion

    Hi everybody, I will be travelling with my daughter w/cf abroad to see my family and I'd like to take advntage of the trip to get a second opinion at a very reputable hospital out there. So my question is how do you go about it? I mean do you just bring x rays and records and ask them what they...
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    Manual CPT methods

    I was wondering what manual CPT methods exist in the US. Here in France we use something that is probably like compression (not sure about the official name). Clapping is forbidden I think. Are there any other methods that are used?
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    Hardwood floors

    I have successfully eliminated almost all chemical cleaning products in my appartment, but I am not sure how to clean hardwood floors. I think vineager will damage them and I haven't found anything to replace the swipes I am currently using. any ideas?
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    bronchial wall thickening in unusual location

    my daughter's doctor called me with her chest x ray results and said that she had a slight bronchial wall thickening but since it was in an unusual location i shouldn't worry and that we will have to follow this up in next x rays and do CT scan if necessary. that seems pretty worriesome to me...
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    pancreatic insufficent->sufficient

    my daughter's latest fecal elastase test came out at 440 or something. She has been on Creon since she was diagnosed a year ago given that her first elastase came out at 60 and she had all the symptoms of pancreatic insufficiency. Now they are talking about taking her off enzymes but I don't...
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    The 3849+10kbc->T mutation

    hi, This is my first post here even though I have been reading the forums for a while. My question is basically what kind of mutation is The 3849+10kbc->T? I thought it was a splicing mutation, but one of the posts here (coming from PTC Therapeutcs I think) mentionned it was a nonsense...
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