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    Tracheal Tug

    Hi everyone! I'm wondering if anyone has any ideas about this. My 4.5 year old has a CRMS dx (1 classic CF mutation, 1 rare variable mutation, low sweat score). About 5-6 months ago I started noticing that he has a pretty prominent tracheal tug from the simplest things like talking more than...
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    Bronchoscopy Question

    My 17 month old son has a CRMS dx (df508 + a "varying consequence" mutation and negative sweat). We switched clinics about 4 months ago. Our new clinic felt that my son's health history and culture history warranted a bronchoscopy. Last Wednesday he had the bronch as well as an endoscopy and...
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    Question about Cultures - When is it concerning?

    I've posted a few times but the quick background is I have a 15 month old son dx CRMS (one disease cause and one variable mutation). He just switched from one clinic that was being reactive to a more proactive clinic last month. The question I have right now is about throat cultures. He has...
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    CRMS and Culture results

    My 1 year old son has a CRMS dx. He just had a clinic appointment a week and a half ago which resulted in a second negative sweat. Our pulm said at the appt that he appears to be healthy - clear lungs etc. She called yesterday to tell me that his culture results came back positive for staph...
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    I have spent countless hours trying to find anyone with the mutation g1069r. I'm really not expecting that anyone will respond because it just seems to be incredibly rare but figured I'd post anyways just in case. I've found some mention of the mutation in a few studies and listed on some patent...