Cystic Fibrosis Forum (EXP)

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  1. C

    Creon dosage

    I wouldn't say that he was in error, but I would ask about the dosage. I do it at every clinic appointment. Are we at the right level, especially if I have any concerns about little one's tummy!
  2. C

    Creon dosage

    I wouldn't say that he was in error, but I would ask about the dosage. I do it at every clinic appointment. Are we at the right level, especially if I have any concerns about little one's tummy!
  3. C

    Sick Relative Coming to Visit

    I had a similar situation as one of the other posters. About 2 weeks after our little guy came home for a month in the NICU, I got a nasty cold. I wore a mask, washed & sanitized my hands like crazy and he didn't get sick. If he's still coughing, I'd make him wear a mask. Otherwise, he should be...
  4. C

    Sick Relative Coming to Visit

    I had a similar situation as one of the other posters. About 2 weeks after our little guy came home for a month in the NICU, I got a nasty cold. I wore a mask, washed & sanitized my hands like crazy and he didn't get sick. If he's still coughing, I'd make him wear a mask. Otherwise, he should be...
  5. C

    Advice...help...opinions...venting!

    We had Tobi when our little one was 10 months old and he did fine. We did full vials, twice daily. It knocked those PA's right out! As for the Peptamen & insurance, work the g-tube angle. Our insurance starting paying for formula as soon as he got the g-tube. Thankfully, as we're going through a...
  6. C

    Advice...help...opinions...venting!

    We had Tobi when our little one was 10 months old and he did fine. We did full vials, twice daily. It knocked those PA's right out! As for the Peptamen & insurance, work the g-tube angle. Our insurance starting paying for formula as soon as he got the g-tube. Thankfully, as we're going through a...
  7. C

    Creon dosage

    My son will be 15 months next week and takes <em>18</em> creon 6 daily. He's completely pancreatic insufficient and only weighs 22 pounds. Given those parameters, your dosage for a 9 year old sounds very, very low.
  8. C

    Creon dosage

    My son will be 15 months next week and takes <em>18</em> creon 6 daily. He's completely pancreatic insufficient and only weighs 22 pounds. Given those parameters, your dosage for a 9 year old sounds very, very low.
  9. C

    Need advice re: nebulizing hypertonic saline...

    We started saline when our little one was about 3 months old. He never had a problem with it (7%, full vial daily). In fact, after we had used it for a couple of months, he started coughing when he took it and I worried about that so stopped giving it to him, but apparently, that's what it's...
  10. C

    Need advice re: nebulizing hypertonic saline...

    We started saline when our little one was about 3 months old. He never had a problem with it (7%, full vial daily). In fact, after we had used it for a couple of months, he started coughing when he took it and I worried about that so stopped giving it to him, but apparently, that's what it's...
  11. C

    Am I overreacting?

    Wow - not culturing PAs until 23 - our little guy cultured them at 9 months. I really wonder if one day they are going to find other genetic indicators for severity of presentation, something beyond just the CF mutations themselves.
  12. C

    Am I overreacting?

    Wow - not culturing PAs until 23 - our little guy cultured them at 9 months. I really wonder if one day they are going to find other genetic indicators for severity of presentation, something beyond just the CF mutations themselves.
  13. C

    Am I overreacting?

    The difference in perspective from parents of CFers vs. CFers is pretty interesting. As for living in a "bubble", he doesn't, I just try to minimize the things that we know are higher risks - drinking after others, hot tubs, those types of things - and let the other stuff go (like teething on...
  14. C

    Am I overreacting?

    The difference in perspective from parents of CFers vs. CFers is pretty interesting. As for living in a "bubble", he doesn't, I just try to minimize the things that we know are higher risks - drinking after others, hot tubs, those types of things - and let the other stuff go (like teething on...
  15. C

    Am I overreacting?

    Oh my goodness! That's awful..note to self, scan playground for unsavory items!
  16. C

    Am I overreacting?

    Oh my goodness! That's awful..note to self, scan playground for unsavory items!
  17. C

    Am I overreacting?

    Bill - not as much as I'd like - which is why I try to head of the things I can control (at least to some degree) and not worry about the rest!
  18. C

    Am I overreacting?

    Bill - not as much as I'd like - which is why I try to head of the things I can control (at least to some degree) and not worry about the rest!
  19. C

    Am I overreacting?

    Bill - not as much as I'd like - which is why I try to head of the things I can control (at least to some degree) and not worry about the rest!
  20. C

    Am I overreacting?

    Bill - not as much as I'd like - which is why I try to head of the things I can control (at least to some degree) and not worry about the rest!
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