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  • emason's Avatar
    Yesterday, 04:28 PM
    A lot will probably come down to the genetics panel. I'm sorry they can't do the full panel straight away but hang in there. Hopefully there will be...
    12 replies | 940 view(s)
  • Katka's Avatar
    12-14-2017, 12:48 PM
    Katka replied to a thread Is it ok in Newly Diagnosed
    Hello everyone, today we received our genetics back. They did not find any mutation. So my lovely baby is not even a carrier. I cant tell how happy...
    8 replies | 2389 view(s)
  • kenna2's Avatar
    12-14-2017, 11:18 AM
    I know this is a hard and stressful time for you. The good news is you're seeing the right people to figure this out! Keep us updated so we can help...
    12 replies | 940 view(s)
  • slk317's Avatar
    12-14-2017, 08:03 AM
    Thanks for your input. His FEV1 shows Ref - 4.00, Pre - 2.69, 90%. They did not do anything with albuterol, or any other kind of treatment. The dr...
    12 replies | 940 view(s)
  • emason's Avatar
    12-13-2017, 08:49 PM
    Couple things. First is that with PFTs, remember there is a learning curve and if this was his first time then I wouldn't be surprised if those...
    12 replies | 940 view(s)
  • slk317's Avatar
    12-13-2017, 06:36 PM
    Yes. What I meant is heís never been diagnosed. They always say they donít hear wheezing. I know nothing about asthma, so not sure how else to have...
    12 replies | 940 view(s)
  • kenna2's Avatar
    12-13-2017, 06:14 PM
    If your son does have CF then he also has asthma...they kinda go hand in hand and are treated with the same medications. The severity of it depends...
    12 replies | 940 view(s)
  • scrapper1264's Avatar
    12-13-2017, 05:53 PM
    Iím so sorry youíre going through all of this. My 15yo was diagnosed this past July with ABPA. His PFTs dropped to the 50-60s, IgE was 900, and was...
    8 replies | 275 view(s)
  • slk317's Avatar
    12-13-2017, 04:46 PM
    Just a quick update... My son met with the pediatric pulmonologist at the CF center here on Monday. We're waiting on insurance approval for...
    12 replies | 940 view(s)
  • Imogene's Avatar
    12-13-2017, 10:12 AM
    548 Participants...most from the USA! But let's reach out to the world...21 countries have responded so far! 548 participants. The 550...
    5 replies | 1961 view(s)
  • Imogene's Avatar
    12-13-2017, 10:09 AM
    Imogene started a thread Blockchain...a blog in Adults
    I posted a blog sent to me by a young mom with a child with a rare disease. We may need to explore the Blockchain technology as we move forward with...
    0 replies | 215 view(s)
  • Imogene's Avatar
    12-13-2017, 10:02 AM
    If you are a resident of the US and a: Pulmozyme User please take a short survey (5 minutes) and receive a $15.00 Gift Card. Need 23: CF...
    0 replies | 246 view(s)
  • Rebjane's Avatar
    12-13-2017, 07:40 AM
    Hi there, It sounds like the doctors are taking your son's symptoms seriously; which is wonderful, they are validating your concerns. The fortunate...
    1 replies | 344 view(s)
  • LittleLab4CF's Avatar
    12-13-2017, 05:43 AM
    This is encouraging news, especially when stuff like antihistamines and Mucinex make me feel like someone who has been pulled through a knot hole...
    5 replies | 628 view(s)
  • fel's Avatar
    12-12-2017, 11:48 PM
    fel replied to a thread NAC vitamins vs Mucinex? in Adults
    My sons take NAC. Their CF doctors know about it and approve. It is hard to tell if it is effective, since they do so many treatments...
    5 replies | 628 view(s)
  • Beth F.'s Avatar
    12-12-2017, 10:36 PM
    Dear artobsessed, (I like your name btw, me too). I am a nearly 37 year old with FEV1 in the mid-40s and holding steadyish for the last couple...
    8 replies | 275 view(s)
  • Imogene's Avatar
    12-11-2017, 01:52 PM
    543 Responses from 48 states! and 22 countries~ We are still aiming for 1000! The 550 respondent ...$25.00 gift card. Thanks everyone! It is...
    5 replies | 1961 view(s)
  • kenna2's Avatar
    12-11-2017, 11:35 AM
    kenna2 replied to a thread Doing it solo, need help! in Families
    I was diagnosed at 7. My parents have always been about routine to keep things organized and what not. It's really been beneficial towards my life...
    2 replies | 187 view(s)
  • Ratatosk's Avatar
    12-11-2017, 10:31 AM
    We've always worked about our work/school schedules for nebulizer vest treatments. I know of a few people who've gone to the daycare or school to do...
    2 replies | 187 view(s)
  • Ratatosk's Avatar
    12-11-2017, 10:23 AM
    Ratatosk replied to a thread NAC vitamins vs Mucinex? in Adults
    There used to be someone on here -- Amy noexcuses who got NAC from Europe. I believe like any supplements, there aren't really any set standards and...
    5 replies | 628 view(s)
  • Mom_EC's Avatar
    12-11-2017, 07:02 AM
    Hi All, Iím divorced from my sonís father & my son was recently diagnosed w a mild variant CF. There are no signs of enzyme deficiency or...
    2 replies | 187 view(s)
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