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  1. M

    Need thoughts on GI issues for 34 month old CF

    thank you for the link. it was helpful. our daughter was treated with keflex for her last cough and that seemed effective for bacterial overgrowth (if that is in fact what she has) also found it interesting about the role of acid supressing drugs in BO. our kiddo does not take this - also heard...
  2. M

    Need thoughts on GI issues for 34 month old CF

    thank you for the link. it was helpful. our daughter was treated with keflex for her last cough and that seemed effective for bacterial overgrowth (if that is in fact what she has) also found it interesting about the role of acid supressing drugs in BO. our kiddo does not take this - also heard...
  3. M

    Need thoughts on GI issues for 34 month old CF

    Our daughter had c-diff. It went undiagosed longer than it should have. Before we received the results, they recommended Flagyl because it is the recommended first line of treatment for both c-diff and bacterial overgrowth. with c-diff, our daughter was pooping 10x/day and the smell is really...
  4. M

    Need thoughts on GI issues for 34 month old CF

    Our daughter had c-diff. It went undiagosed longer than it should have. Before we received the results, they recommended Flagyl because it is the recommended first line of treatment for both c-diff and bacterial overgrowth. with c-diff, our daughter was pooping 10x/day and the smell is really...
  5. M

    ataluren

    I e-mailed a gal at PTC and she said that the results from the phase III clinical trials would be available "by the end of the quarter" Is this now? I am on their e-mail list but have not heard anything yet. I know there has not really been any "buzz" about its effects but did notice they are...
  6. M

    ataluren

    I e-mailed a gal at PTC and she said that the results from the phase III clinical trials would be available "by the end of the quarter" Is this now? I am on their e-mail list but have not heard anything yet. I know there has not really been any "buzz" about its effects but did notice they are...
  7. M

    Advice some food for my 6 months old cf daughter

    I cannot remember exactly but a few idease are avocado, coconut oil, scrambled eggs, lentils, sweet potatoes with butter...smashed or blended to a consistency that was appropriate. I think i also began doing smoothies with added fats for extra calories (i.e. nutter butter, yogurt, flaxseed oil...
  8. M

    Advice some food for my 6 months old cf daughter

    I cannot remember exactly but a few idease are avocado, coconut oil, scrambled eggs, lentils, sweet potatoes with butter...smashed or blended to a consistency that was appropriate. I think i also began doing smoothies with added fats for extra calories (i.e. nutter butter, yogurt, flaxseed oil...
  9. M

    Low iron levels

    my little one has had anemia and her numbers have improved with diet...i'll be very curious to see her levels now (won't check again for another 3 months). we did try to increase red meat but other things we have done include prunes (high in iron) and cooking in cast iron. trying to serve iron...
  10. M

    Low iron levels

    my little one has had anemia and her numbers have improved with diet...i'll be very curious to see her levels now (won't check again for another 3 months). we did try to increase red meat but other things we have done include prunes (high in iron) and cooking in cast iron. trying to serve iron...
  11. M

    Jasey was in hospital wed thru fri for c-diff colitis

    my little one had c-diff last year when she was just over a year old. she had not been on antibiotics or in the hospital. I don't know where she might have picked it up. We saw a GI specialist who sees a lot of kids with CF and he did tell us it was more common with CF although i have not heard...
  12. M

    Jasey was in hospital wed thru fri for c-diff colitis

    my little one had c-diff last year when she was just over a year old. she had not been on antibiotics or in the hospital. I don't know where she might have picked it up. We saw a GI specialist who sees a lot of kids with CF and he did tell us it was more common with CF although i have not heard...
  13. M

    Amniocentesis

    we were told 2-3 weeks and for us it took ALL of three weeks. good luck<br>
  14. M

    Amniocentesis

    we were told 2-3 weeks and for us it took ALL of three weeks. good luck<br>
  15. M

    Synagis

    Hello. My little one has been trucking right along but we went in for a weight check yesterday and she lost 8 oz in 3 weeks! <br><br>This has never happened, not even when she had c-diff for 6 weeks and was pooping 6-10x/day! <br><br>I don't think it is her enzyme dose as she is eating less and...
  16. M

    Synagis

    Hello. My little one has been trucking right along but we went in for a weight check yesterday and she lost 8 oz in 3 weeks! <br><br>This has never happened, not even when she had c-diff for 6 weeks and was pooping 6-10x/day! <br><br>I don't think it is her enzyme dose as she is eating less and...
  17. M

    Synagis

    Hello. My little one has been trucking right along but we went in for a weight check yesterday and she lost 8 oz in 3 weeks! <br><br>This has never happened, not even when she had c-diff for 6 weeks and was pooping 6-10x/day! <br><br>I don't think it is her enzyme dose as she is eating less and...
  18. M

    creon help

    we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very...
  19. M

    creon help

    we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very...
  20. M

    creon help

    we have asked this question many times, we have asked our daughter's CF doc, her CF nutritionist and a very highly regarded pediatric GI specialist...and unfortunately there is not, as far as we have understood them<br><br>in addition, the regulation of enzymes (despite best efforts) is very...
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