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  1. H

    Diagnosed at age 50

    A citation taken from an article discussing 12 cases of those with the R334W mutation (most of whom also had the DF508 mutation.) Full article can be found here: <a target=_blank class=ftalternatingbarlinklarge...
  2. H

    Vertex drugs show promise with DF508

    Bump up for Sarah. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  3. H

    Vertex drugs show promise with DF508

    Bump up for Sarah. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  4. H

    Vertex drugs show promise with DF508

    Bump up for Sarah. <img src="i/expressions/face-icon-small-smile.gif" border="0">
  5. H

    If you ever test positive for CF is that a guarantee?

    It depends on what kind of test. The test done as part of the newborn screen- IRT levels- often has false positive and can also have false negative results. The majority of elevated IRT's are false positives, so sweat tests and genetic testing must be done on all elevated results to further rule...
  6. H

    If you ever test positive for CF is that a guarantee?

    It depends on what kind of test. The test done as part of the newborn screen- IRT levels- often has false positive and can also have false negative results. The majority of elevated IRT's are false positives, so sweat tests and genetic testing must be done on all elevated results to further rule...
  7. H

    If you ever test positive for CF is that a guarantee?

    It depends on what kind of test. The test done as part of the newborn screen- IRT levels- often has false positive and can also have false negative results. The majority of elevated IRT's are false positives, so sweat tests and genetic testing must be done on all elevated results to further rule...
  8. H

    seems as if the enzymes are no longer working?

    Introducing cow's milk for the first time can be tough on any child, cf or not. If her weight loss and change in stools corresponds strongly to her reducing breastfeeding and introducing milk, I would consider that as the biggest culprit and introduce the formula the nutritionist has in mind...
  9. H

    seems as if the enzymes are no longer working?

    Introducing cow's milk for the first time can be tough on any child, cf or not. If her weight loss and change in stools corresponds strongly to her reducing breastfeeding and introducing milk, I would consider that as the biggest culprit and introduce the formula the nutritionist has in mind...
  10. H

    seems as if the enzymes are no longer working?

    Introducing cow's milk for the first time can be tough on any child, cf or not. If her weight loss and change in stools corresponds strongly to her reducing breastfeeding and introducing milk, I would consider that as the biggest culprit and introduce the formula the nutritionist has in mind...
  11. H

    Daughter Going In For 2nd Bronch

    Becca's Mom~ Emily just had a bronch and endoscopy done at the same time last week. She did very well with the anesthesia (propofol.) Her o2 levels were on the low side immediately following but came up nicely with a short period on o2, and then when they dropped again a bit on room air, a short...
  12. H

    Daughter Going In For 2nd Bronch

    Becca's Mom~ Emily just had a bronch and endoscopy done at the same time last week. She did very well with the anesthesia (propofol.) Her o2 levels were on the low side immediately following but came up nicely with a short period on o2, and then when they dropped again a bit on room air, a short...
  13. H

    Daughter Going In For 2nd Bronch

    Becca's Mom~ Emily just had a bronch and endoscopy done at the same time last week. She did very well with the anesthesia (propofol.) Her o2 levels were on the low side immediately following but came up nicely with a short period on o2, and then when they dropped again a bit on room air, a short...
  14. H

    CF services leaves enzymes at door in 100 degree weather

    I would first call the enzyme manufacturer and find out specific parameters from them- what temperature the enzymes need to be stored at in order to remain effective, and how they should be shipped during extreme weather in order to best preserve their effectiveness. See if they can mail or fax...
  15. H

    CF services leaves enzymes at door in 100 degree weather

    I would first call the enzyme manufacturer and find out specific parameters from them- what temperature the enzymes need to be stored at in order to remain effective, and how they should be shipped during extreme weather in order to best preserve their effectiveness. See if they can mail or fax...
  16. H

    CF services leaves enzymes at door in 100 degree weather

    I would first call the enzyme manufacturer and find out specific parameters from them- what temperature the enzymes need to be stored at in order to remain effective, and how they should be shipped during extreme weather in order to best preserve their effectiveness. See if they can mail or fax...
  17. H

    Bactrim

    Emily MUST take it with food or she throws it up. She does occasionally get headaches with this one as well as others, but taking motrin usually helps. Probiotics help a lot with GI effects that come along with pretty much all abx so I'd try a good multi-strain one a couple times a day and see...
  18. H

    Bactrim

    Emily MUST take it with food or she throws it up. She does occasionally get headaches with this one as well as others, but taking motrin usually helps. Probiotics help a lot with GI effects that come along with pretty much all abx so I'd try a good multi-strain one a couple times a day and see...
  19. H

    Bactrim

    Emily MUST take it with food or she throws it up. She does occasionally get headaches with this one as well as others, but taking motrin usually helps. Probiotics help a lot with GI effects that come along with pretty much all abx so I'd try a good multi-strain one a couple times a day and see...
  20. H

    Diagnosed at age 50

    If you aren't impressed with Yale, I'd encourage you to to give Hartford's center a try. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I take my daughter to the ped side of the clinic up there and can't say enough good things about them. There is another member here who also...
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