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  1. H

    Our Dx changed

    WHAT?! Even telling you cpt won't help tells me how misinformed he is. CPT is routinely prescribed for those with pneumonia and for those on vents, etc.. nothing to do with CF. This really, REALLY concerns me. <img src="i/expressions/face-icon-small-sad.gif" border="0"> <br /> <br />I echo...
  2. H

    3 month old that weighs 7lbs 8oz

    What were her stools looking like before she started the Creon? That is an important factor to consider in looking for changes now that she is on Creon. If she had greasy stools before- oil separating from the rest of what is in her diaper, a shiny/greasy look or feel to the poop you should...
  3. H

    3 month old that weighs 7lbs 8oz

    What were her stools looking like before she started the Creon? That is an important factor to consider in looking for changes now that she is on Creon. If she had greasy stools before- oil separating from the rest of what is in her diaper, a shiny/greasy look or feel to the poop you should...
  4. H

    3 month old that weighs 7lbs 8oz

    What were her stools looking like before she started the Creon? That is an important factor to consider in looking for changes now that she is on Creon. <br /> <br />If she had greasy stools before- oil separating from the rest of what is in her diaper, a shiny/greasy look or feel to the poop...
  5. H

    Ambry CF gene test - now the wait begins

    Ambry does not do any kind of 'panel' testing (many people move on to Ambry testing after other lab panel testing does not come back showing both mutations.) If initial checking for DF508 does not come back for 2 copies, they start a systematic sequencing of the entire gene, followed by testing...
  6. H

    Ambry CF gene test - now the wait begins

    Ambry does not do any kind of 'panel' testing (many people move on to Ambry testing after other lab panel testing does not come back showing both mutations.) If initial checking for DF508 does not come back for 2 copies, they start a systematic sequencing of the entire gene, followed by testing...
  7. H

    Ambry CF gene test - now the wait begins

    Ambry does not do any kind of 'panel' testing (many people move on to Ambry testing after other lab panel testing does not come back showing both mutations.) If initial checking for DF508 does not come back for 2 copies, they start a systematic sequencing of the entire gene, followed by testing...
  8. H

    CF video 2011

    Beautiful, Tiffany!!! <img src="i/expressions/rose.gif" border="0">
  9. H

    CF video 2011

    Beautiful, Tiffany!!! <img src="i/expressions/rose.gif" border="0">
  10. H

    CF video 2011

    Beautiful, Tiffany!!! <img src="i/expressions/rose.gif" border="0">
  11. H

    Should the Vest make my daughter cough?

    Emily has always coughed some when doing the vest (but then again, she has a baseline cough too) but coughs MORE now that we have the vest programmed with Minnesota protocol. If you ask your clinic RT or PT about it you should be able to get more info about that. It varies the speeds and...
  12. H

    Should the Vest make my daughter cough?

    Emily has always coughed some when doing the vest (but then again, she has a baseline cough too) but coughs MORE now that we have the vest programmed with Minnesota protocol. If you ask your clinic RT or PT about it you should be able to get more info about that. It varies the speeds and...
  13. H

    Should the Vest make my daughter cough?

    Emily has always coughed some when doing the vest (but then again, she has a baseline cough too) but coughs MORE now that we have the vest programmed with Minnesota protocol. If you ask your clinic RT or PT about it you should be able to get more info about that. It varies the speeds and...
  14. H

    child with vest and g-tube

    I don't know which vest you have, but HillRom will send you a foam thing you can put between your child's shirt and the vest to help cushion the area around the gtube if she is experiencing discomfort. When she first had hers placed we folded a small towel (hand towel sized) and placed it over...
  15. H

    child with vest and g-tube

    I don't know which vest you have, but HillRom will send you a foam thing you can put between your child's shirt and the vest to help cushion the area around the gtube if she is experiencing discomfort. When she first had hers placed we folded a small towel (hand towel sized) and placed it over...
  16. H

    child with vest and g-tube

    I don't know which vest you have, but HillRom will send you a foam thing you can put between your child's shirt and the vest to help cushion the area around the gtube if she is experiencing discomfort. When she first had hers placed we folded a small towel (hand towel sized) and placed it over...
  17. H

    Swallowing Creon pills

    Right when you start eating, since they have a limited amount of time that they are effective. Emily takes hers with her first bites of food; and has had no problems if she forgets and takes them later in the meal. When it works the way it should, the pancreas naturally secretes enzymes when...
  18. H

    Swallowing Creon pills

    Right when you start eating, since they have a limited amount of time that they are effective. Emily takes hers with her first bites of food; and has had no problems if she forgets and takes them later in the meal. When it works the way it should, the pancreas naturally secretes enzymes when...
  19. H

    Swallowing Creon pills

    Right when you start eating, since they have a limited amount of time that they are effective. Emily takes hers with her first bites of food; and has had no problems if she forgets and takes them later in the meal. When it works the way it should, the pancreas naturally secretes enzymes when...
  20. H

    Whether to get a feeding tube or not?

    I understand what you are saying about wanting to wait until the child can understand what the tube is for and therefore being able to help participate in the decision-making process. In an ideal world, we wouldn't put our kids through any procedures until they were old enough to be able to...
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