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  • Ratatosk's Avatar
    Yesterday, 11:35 AM
    Hill Rom has come out with a new vesting system, similar to the Afflo (sp) vest. Wonder how this compares to the regular vest system in terms of...
    0 replies | 49 view(s)
  • Ratatosk's Avatar
    04-25-2017, 03:27 PM
    When DS was first diagnosed wcf, I "met" a woman online whose child was diagnosed wcf and had a vest, but later because the because his mutations...
    2 replies | 86 view(s)
  • Ratatosk's Avatar
    04-24-2017, 01:06 PM
    Ratatosk replied to a thread Dios in Adults
    That is my understanding. When ds was first diagnosed due to a bowel obstruction caused by meconium ileus, his doctors spoke of possible future...
    3 replies | 122 view(s)
  • Ratatosk's Avatar
    04-21-2017, 06:29 AM
    Ratatosk replied to a thread Is no cough good or bad? in Adults
    Could be too that in addition to the inflammation being reduced that stuff was coming from his sinuses making him cough and that he doesn't have...
    4 replies | 562 view(s)
  • Ratatosk's Avatar
    04-20-2017, 03:00 PM
    Am I correct in reading under #1 that the test was to detect the 32 most common mutations? Or did they test for more?
    6 replies | 816 view(s)
  • Ratatosk's Avatar
    04-20-2017, 11:37 AM
    This announcement makes me a little wary. We've had issues with our BCBS Pharmacy (Prime) in the past -- issues with prescriptions we've never...
    0 replies | 262 view(s)
  • Ratatosk's Avatar
    04-20-2017, 11:30 AM
    Ratatosk replied to a thread Primary Care Dr in Adults
    DS' is still a teen, but we've always had an infection disease specialist as his primary CF physician then we have a local pediatrician who handles...
    5 replies | 382 view(s)
  • Ratatosk's Avatar
    04-19-2017, 11:54 AM
    Ratatosk replied to a thread For the moms and dads in Adults
    I saw it on facebook and it brought back a lot of memories of DS' NICU stay --- crying/praying in the shower, anger/screaming fits in the car when...
    2 replies | 455 view(s)
  • Ratatosk's Avatar
    04-19-2017, 09:21 AM
    Depending upon how much I walk -- tend to put on more miles in the summer, I replace my shoes every 6-12 months. I wear ascics. Currently I'm...
    7 replies | 462 view(s)
  • Ratatosk's Avatar
    04-17-2017, 09:07 PM
    Ratatosk replied to a thread Increased cough in Adults
    I imagine he wouldn't be too thrilled about adding a sinus rinse into the mix. Ds likes to do it cuz it grosses me out and I dry heave.
    31 replies | 2013 view(s)
  • Ratatosk's Avatar
    04-17-2017, 03:25 PM
    Ratatosk replied to a thread Increased cough in Adults
    Have you increased the number of vest or CPT treatments you do a day? When ds develops a cough we increase vest treatments from 3 a day to 4 and...
    31 replies | 2013 view(s)
  • Ratatosk's Avatar
    04-13-2017, 11:43 AM
    Ratatosk replied to a thread How long to baseline? in Adults
    Ugh, I thought after they got older, one didn't have to worry so much about RSV! I was so terrified of it when DS was an infant and in daycare...
    19 replies | 1081 view(s)
  • Ratatosk's Avatar
    04-05-2017, 10:21 AM
    DS has had both a Wii and Xbox systems. Xbox is handsfree -- originally had an xbox 360 with a Kinect, now has an xbox one. Wii had more options...
    7 replies | 644 view(s)
  • Ratatosk's Avatar
    04-03-2017, 10:03 AM
    It is scary! Especially when you hear stories of people who do everything they're supposed to do and still come down with a CF bug, get knocked for...
    55 replies | 6274 view(s)
  • Ratatosk's Avatar
    04-03-2017, 09:49 AM
    Ratatosk replied to a thread CF/not CF in Adults
    I always understood higher number = cf. Guess a lot depends though on the age of the child. Teeny tiny infants it's more difficult to get enough of...
    6 replies | 568 view(s)
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Parent to a child wcf double delta f508

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