Cystic Fibrosis Forum (EXP)

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  1. K

    Nebulizer cup confusion

    Hi all - you'd think I'd know this by now! At any rate, we use the Sidestream Plus for DD's HTS and the Sidestream cup for Pulmozyme. We recently purchased a Pari Vios and received two LC Sprints with the compressor. What can these be used for? Thanks.
  2. K

    Nebulizer cup confusion

    Hi all - you'd think I'd know this by now! At any rate, we use the Sidestream Plus for DD's HTS and the Sidestream cup for Pulmozyme. We recently purchased a Pari Vios and received two LC Sprints with the compressor. What can these be used for? Thanks.
  3. K

    can anyone recommend a good vaccuum

    Dyson Animal. I used to have a "regular" Dyson...switched to the Animal and was horrified at how much the first one left behind....
  4. K

    can anyone recommend a good vaccuum

    Dyson Animal. I used to have a "regular" Dyson...switched to the Animal and was horrified at how much the first one left behind....
  5. K

    Pulmozyme

    BTW...we haven't specifically been advised, but I did hear that it's best to neb Pulmozyme at night so it sits in the lungs longer...
  6. K

    Pulmozyme

    BTW...we haven't specifically been advised, but I did hear that it's best to neb Pulmozyme at night so it sits in the lungs longer...
  7. K

    Pulmozyme

    Hi there! DD has been on Pulmozyme since about 9 mos old. Our first CF center didn't want to start any patients until they were over two years old. For various other reasons, we switched clinics and the new center started her on Pulmozyme right away. Her lungs were showing signs of "changes" at...
  8. K

    Pulmozyme

    Hi there! DD has been on Pulmozyme since about 9 mos old. Our first CF center didn't want to start any patients until they were over two years old. For various other reasons, we switched clinics and the new center started her on Pulmozyme right away. Her lungs were showing signs of "changes" at...
  9. K

    vx770 and pregnancy

    I've wondered about this myself as I hope DD will have children of her own one day. I'm assuming (God-willing!) that there will be a treatment for her along the lines of the Vertex drugs by that time. Unfortunately, the data for safety in utero may not available for quite sometime....
  10. K

    Hearing loss

    I will be praying for you and your little girl. Keep us updated!
  11. K

    Sinus/Nasal Issues

    Hey there...DD has been an "open-mouth" breather for quite sometime now - she also snores but not as loudly as she used to. However, she can close her mouth and breathe through her nose when asked and seems to do so without issue. For whatever reason, her center wants to start with a sleep...
  12. K

    Sinus/Nasal Issues

    Hey there...DD has been an "open-mouth" breather for quite sometime now - she also snores but not as loudly as she used to. However, she can close her mouth and breathe through her nose when asked and seems to do so without issue. For whatever reason, her center wants to start with a sleep...
  13. K

    Back into the hospital tonight

    Thinking of all of you...
  14. K

    Back into the hospital tonight

    Thinking of all of you...
  15. K

    Breastfeeding help please!

    I do have to say that when I pumped for a year with DD, my supply slowly dwindled - even though I pumped at least four times during the day. Pumping doesn't simulate nursing in the sense that the body doesn't respond the same way as when an infant nurses...
  16. K

    Breastfeeding help please!

    I do have to say that when I pumped for a year with DD, my supply slowly dwindled - even though I pumped at least four times during the day. Pumping doesn't simulate nursing in the sense that the body doesn't respond the same way as when an infant nurses...
  17. K

    DDF508

    Kalydeco (VX-770) is working wonderfully on those with the G551D mutation, not delta508. VX-809 for delta508 isn't proving to be as dramatic and they are working on a 770/809 combo to see if they'll achieve better results. There is another drug in the pipeline for delta508 (VX-661)...this tells...
  18. K

    DDF508

    Kalydeco (VX-770) is working wonderfully on those with the G551D mutation, not delta508. VX-809 for delta508 isn't proving to be as dramatic and they are working on a 770/809 combo to see if they'll achieve better results. There is another drug in the pipeline for delta508 (VX-661)...this tells...
  19. K

    your experience with cf centers in california

    Hi there - we only have experience with UCD and Sutter Sacramento. We weren't happy with UCD and switched to Sutter...good luck to you!
  20. K

    your experience with cf centers in california

    Hi there - we only have experience with UCD and Sutter Sacramento. We weren't happy with UCD and switched to Sutter...good luck to you!
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