Search results

  1. T

    Would you Recommend the Vest?

    My son (20 yrs) loves his vest. He uses it for airway clearance and when he’s not feeling well runs it at lower levels for a massage like feeling too.
  2. T

    Speed Bump

    Oh sweetie I’m sorry. I don’t have any advice other than maybe start playing board games & card games as a family or just you & your husband. Something outside the norm of electronics can bring people together or make new memories.
  3. T

    Adrenal insufficiency

    fel - my son developed it around 15 years old. We really didn't use a lot of steroids until then, so not sure if it was caused by the steroid use or just general deterioration of stuff. He's also been pre-diabetic for CFRD since he was around 12. Once in a long while during a hospital IV stay...
  4. T


    There are all different levels of the disease. Even if your grandson has CF, there are lots of ways to treat this and be proactive to keep him as healthy as possible. I would advise having him seen at an accredited CF center, not just the pediatrician.
  5. T

    Adrenal insufficiency

    Adrenal insufficiency is a pain in the butt..... in a nutshell, when your adrenal glands aren't working right everything is harder. It's harder to heal, to clear congestion, you are more tired, VERY emotional extremes, plus it can mess with blood sugars when you add in additional steroids as...
  6. T

    An upgrade to is being launched!

    crossing my fingers that it all goes smoothly! SO excited and thankful for this resource!!
  7. T

    Losing the Battle on Sinus Infections

    Sometimes you can even find an ENT doc that works with CF patients. Schedule a visit with your CF team to discuss your concerns. Printer is right, they're the best source for you, make sure you use them as such. They may not be aware you're having concerns. Most of my son's hospital stays...
  8. T

    Zyvox Acne Rash Advice

    Fantastic!! Will pick some up and use when my son is on zyvox!
  9. T

    nasal polyps and deviated septum

    Amber, the sinus flushes really do make a difference. Of course they don't work once the polyps get so many/so big that they block the passages. It's not horrible, make sure the water is warm for sure. My son starts with just one or two squeezes in each nostril. The netti pots did NOT work...
  10. T

    I'm 36!

    Happy Birthday Welshwitch! I've loved getting to know you on this forum and YAY YOU!!! KICKING CF's BUTT! :) Party the whole month long.
  11. T

    A New Home for!

    That's absolutely amazing!! I know the site has helped me and my family and I hope it's done the same for many many others. :)
  12. T

    Depression & anxiety (a new way to cope)

    What an amazing idea! I think this is a great idea!! Also love knitting (my true love is dyeing yarn & knitting away.....) I think the idea of spending quiet time working one piece at a time in the adult coloring book type pictures is calming AND creating something beautiful to hang up...
  13. T

    Curious what's everyone's hospital like?

    I forgot the biggie, not only does my son get his own room to avoid getting other infections/viruses from other patients, but we schedule his admittances to go after an office sick-day visit. That way we sit in our own private examination room and not in the midst of all the sick people waiting...
  14. T

    Curious what's everyone's hospital like?

    My son goes to KU Medical Center in KC. It's a full hospital, with just one part of one floor as the pediatric area. He has his own room, usually no fridge, but there is a fridge that patients and families can use, so we bring lots of extra treats in. We always request meal tickets as well as...
  15. T

    Help I Need Advice ASAP!

    I agree with Printer! Please contact your old center asap and see what they can do. Explain your health situation and ask that they contact a doctor or nurse practitioner to get you seen asap at the new center. Possibly they could even get you on the phone with someone to schedule an admit to...
  16. T

    back to upmc

    Cam, hoping you are doing better. We are all praying for you too. My son is on zocyn quite often and that's a powerful antibiotic. I'm hoping it will give you some relief. Please always feel comfortable expressing your fears and feelings here, we absolutely are supportive and understand that...
  17. T

    IV ball options?

    Ok this is the coolest thing I've ever seen. I've never heard of an IV ball before. I'm asking about that for our next home IV setup!!
  18. T


    I'm treasuregoddess. :) great idea!
  19. T

    Just one day off

    joannemk, I'm so very sorry for your loss. OH absolutely I am thankful to have all these treatments and medicines as that's what's keeping my kid mostly healthy! We live in a time where there is a lot of potential, yet there is also the threat that any little cold or infection may make our...
  20. T

    Welcome to my New Granddaughter

    So very, very happy for you! Also a note for Connor as well as other parents with young ones getting stressed (and teens too)....please ask if you have care life specialists, music therapists or anyone on staff to help reduce anxiety. These are often available at children's hospitals and also...