Recent content by ymikhale

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    Anyone with Mutation 3849+10kbC-T

    my dd has this mutation. She was diagnosed at birth through systematic screening. she has no digestive issues but culture CF bugs and lungwise has a classic CF i would say.
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    New Adult Diagnosis - Awaiting Sweat Test

    My dd has exactly the same mutations as you. she was diagnosed at birth thanks to systematic screening. she also has only respiratory symptoms but it ssems that on respiratory side she is just like everybody else in spite of the milder second mutation. Sorry to hear about the diagnosis but you...
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    Class trip

    HI, I always avoid this kind of stuff, even though my DD is disapointed, she eventually gets over it. There are plenty of other fun things to do and lung damage is permanent. that's my take on it, but there are others who probably see it differently.
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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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    My son has this combination: 3849+10kbC and 712-G->T

    My daughter is 10 and has the same first mutation as well. she is pancreatic sufficient and doing relatively well. She had several PA infections though, but hasn't been hospitalized yet. It is difficult to tell who the desease will evolve based on mutations, so i think it is a good thing that...
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    Elastase Test--- with or without enzymes??

    no, from what i heard, you don't need to
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    CF and natural options... ???

    I have spent a fortune on different supplemental treatments prescribed by a naturopathe, who also happenned to be an MD, which kind of made me more confident. And the result: zero! Having said that, i do believe that a healthy diet and lifestyle are very important - whether you have CF or not
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    residual function & Kalydeco news

    I am confused because as JDsmom said, the study is aimed at heterozygous DF508 people, my understanding is that it does not target specifically residual function.
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    residual function & Kalydeco news

    Oh, thanks, I guess i missed the results of this. so basically they ar not going to do anything specific for residual function anymore from what i gather. My dd has one copy of delta 508 but she is too young. thanks for answering
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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 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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    How careful are you?

    I don't let my dd play in the dirt and go near any stale water
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    have any of you cf Haemophilus parainfluenzae in sputum? What was the treatment? than

    my dd cultures it regularly, especially when she has colds. They treat it depeding on symptoms or if she hasn't been treated with antibiotics for a long time
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    my dd cultured PA when she was 15 m/o. We treated with 3 cycles of Tobi and it was gone. Then it came back a year later and we got rid of it again. She hasn't cultured for 3 years now (touch wood)
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    Kalydeco/lumacaftor for DDF508 results are in.

    according to VX661 is also for tow copies of DF508. did i miss something?
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    Kalydeco/lumacaftor for DDF508 results are in.

    sounds exciting for those with these mutations!