Recent content by cabgodfrey

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    Kalydeco - liver enzymes are elevated *UPDATE*

    Is there any discussion of not needing to take enzymes? Has digestion improved with Kalydeco?
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    Kalydeco

    Would love to hear more from those of you who are taking Kalydeco. We are living vicariously through you all as our daughter does not have G551D and is anxiously awaiting continued trials of VX809 with Kalydeco. In the meantime, we are very excited for those of you who are able to take...
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    What is your FEV1 Score?

    My daughter just did PFT's yesterday.  She is 13 and her FEV1 is 105%.  No O2.
  4. C

    What is your FEV1 Score?

    My daughter just did PFT's yesterday. She is 13 and her FEV1 is 105%. No O2.
  5. C

    What is your FEV1 Score?

    My daughter just did PFT's yesterday. She is 13 and her FEV1 is 105%. No O2.
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    Zenpep

    Hi, Is your husband still having good results with Zenpep? Does he take them all before he eats or some during? My daughter has been on Creon her whole life but she is not hungry and having a lot of digestive issues. Thought Zenpep might be worth trying. Thanks! Carrie Godfrey
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    Zenpep

    Hi, Is your husband still having good results with Zenpep? Does he take them all before he eats or some during? My daughter has been on Creon her whole life but she is not hungry and having a lot of digestive issues. Thought Zenpep might be worth trying. Thanks! Carrie Godfrey
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    Zenpep

    Hi, <br /> <br />Is your husband still having good results with Zenpep? Does he take them all before he eats or some during? My daughter has been on Creon her whole life but she is not hungry and having a lot of digestive issues. Thought Zenpep might be worth trying. <br /> <br />Thanks! <br...
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    Do you take Mucinex??

    Wow, I have heard that Mucinex dries up the mucus in the lungs and other areas of the body and it isn't able to get out so it clogs the airways and sinuses, etc. That is why they prescribe hypertonic saline or Pulmozyme, because those meds moisten the mucus and allow it to be coughed up and...
  10. C

    Do you take Mucinex??

    Wow, I have heard that Mucinex dries up the mucus in the lungs and other areas of the body and it isn't able to get out so it clogs the airways and sinuses, etc. That is why they prescribe hypertonic saline or Pulmozyme, because those meds moisten the mucus and allow it to be coughed up and...
  11. C

    Do you take Mucinex??

    Wow, I have heard that Mucinex dries up the mucus in the lungs and other areas of the body and it isn't able to get out so it clogs the airways and sinuses, etc. That is why they prescribe hypertonic saline or Pulmozyme, because those meds moisten the mucus and allow it to be coughed up and...
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    Has anyone tried to use Coconut Oil?

    Hi, How much do you give your daughter and where do you buy the product? Do you bake with it or just give it as milk and supplements? Thanks
  13. C

    Has anyone tried to use Coconut Oil?

    Hi, How much do you give your daughter and where do you buy the product? Do you bake with it or just give it as milk and supplements? Thanks
  14. C

    Has anyone tried to use Coconut Oil?

    Hi, <br /> <br />How much do you give your daughter and where do you buy the product? Do you bake with it or just give it as milk and supplements? Thanks
  15. C

    Has anyone tried to use Coconut Oil?

    Hi, How much do you give your daughter and where do you buy the product? Do you bake with it or just give it as milk and supplements? Thanks
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