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  1. Z

    PTC 124

    Hi all, Maybe I missed something here, but last I had heard the drug PTC 124 was really promising for those with mutations that are nonsense (I think that means they end in a X.) I was looking on the drug pipeline of the foundations website and I didn't see it mentioned at all! Is it renamed...
  2. Z

    PTC 124

    Hi all, Maybe I missed something here, but last I had heard the drug PTC 124 was really promising for those with mutations that are nonsense (I think that means they end in a X.) I was looking on the drug pipeline of the foundations website and I didn't see it mentioned at all! Is it renamed...
  3. Z

    PTC 124

    Hi all, <br /> <br />Maybe I missed something here, but last I had heard the drug PTC 124 was really promising for those with mutations that are nonsense (I think that means they end in a X.) I was looking on the drug pipeline of the foundations website and I didn't see it mentioned at all! Is...
  4. Z

    What else should I be doing ?

    I would love to hear the answer too! I also have a three year old born in 05 and all we do is the vest 2X a day, enzymes, and vitamins. She is doing great, but I can't help but wonder if we should be doing something else.... Thanks! Zoe mom to Kate wCF and Ava
  5. Z

    What else should I be doing ?

    I would love to hear the answer too! I also have a three year old born in 05 and all we do is the vest 2X a day, enzymes, and vitamins. She is doing great, but I can't help but wonder if we should be doing something else.... Thanks! Zoe mom to Kate wCF and Ava
  6. Z

    What else should I be doing ?

    I would love to hear the answer too! I also have a three year old born in 05 and all we do is the vest 2X a day, enzymes, and vitamins. She is doing great, but I can't help but wonder if we should be doing something else.... Thanks! Zoe mom to Kate wCF and Ava
  7. Z

    What else should I be doing ?

    I would love to hear the answer too! I also have a three year old born in 05 and all we do is the vest 2X a day, enzymes, and vitamins. She is doing great, but I can't help but wonder if we should be doing something else.... Thanks! Zoe mom to Kate wCF and Ava
  8. Z

    What else should I be doing ?

    I would love to hear the answer too! I also have a three year old born in 05 and all we do is the vest 2X a day, enzymes, and vitamins. She is doing great, but I can't help but wonder if we should be doing something else.... <br /> <br />Thanks! <br />Zoe mom to Kate wCF and Ava
  9. Z

    Vitamin Question-HELP!

    Thanks for the suggestions. Kate does get her enzymes from the CF pharmacy, but it was through the Wee Care program. So I guess I should have said I've never used them for anything that I've had to pay and use insurance (yet!) I've already got a script for our next batch of enzymes/vitamins...
  10. Z

    Vitamin Question-HELP!

    Thanks for the suggestions. Kate does get her enzymes from the CF pharmacy, but it was through the Wee Care program. So I guess I should have said I've never used them for anything that I've had to pay and use insurance (yet!) I've already got a script for our next batch of enzymes/vitamins...
  11. Z

    Vitamin Question-HELP!

    Thanks for the suggestions. Kate does get her enzymes from the CF pharmacy, but it was through the Wee Care program. So I guess I should have said I've never used them for anything that I've had to pay and use insurance (yet!) I've already got a script for our next batch of enzymes/vitamins...
  12. Z

    Vitamin Question-HELP!

    Thanks for the suggestions. Kate does get her enzymes from the CF pharmacy, but it was through the Wee Care program. So I guess I should have said I've never used them for anything that I've had to pay and use insurance (yet!) I've already got a script for our next batch of enzymes/vitamins...
  13. Z

    Vitamin Question-HELP!

    Thanks for the suggestions. Kate does get her enzymes from the CF pharmacy, but it was through the Wee Care program. So I guess I should have said I've never used them for anything that I've had to pay and use insurance (yet!) I've already got a script for our next batch of enzymes/vitamins...
  14. Z

    Vitamin Question-HELP!

    Hi all, I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have that kind of...
  15. Z

    Vitamin Question-HELP!

    Hi all, I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have that kind of...
  16. Z

    Vitamin Question-HELP!

    Hi all, I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have that kind of...
  17. Z

    Vitamin Question-HELP!

    Hi all, I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have that kind of...
  18. Z

    Vitamin Question-HELP!

    Hi all, <br /> <br />I haven't posted in a while, things HAD been going really well. Well, at my daughter's April yearly blood draw it came back that her vitamin D levels are low. (27 and normal for a 3 year old is 30-100- YIKES!) The dr. prescribed Drisdol which is 150.00!!! I do not have...
  19. Z

    VX-809 for DDF508

    My daughter is getting a new CF doctor this spring (kind of a bummer) because her doctore is a researcher for this drug. I think she got a big grant or something to bump up the research so now Kate will have someone new. It is very exciting stuff! Zoe, mom to Kate wCF and Ava no CF
  20. Z

    VX-809 for DDF508

    My daughter is getting a new CF doctor this spring (kind of a bummer) because her doctore is a researcher for this drug. I think she got a big grant or something to bump up the research so now Kate will have someone new. It is very exciting stuff! Zoe, mom to Kate wCF and Ava no CF
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