Search results

  1. S

    I'm new here (About Me)

    Welcome! You sound similar to my son since he was not diagnosed until he was 5 years old, and was misdiagnosed with asthma. We moved when he was 2yo and 4yo so a relationship with the same ped delayed his diagnosis. Thankfully he was able to start all the meds needed when he was 5. I hope...
  2. S

    Airway Clearance while camping/road tripping

    There are a few battery operated, ac/dc adapter nebulizers out there. They came in handy while traveling to Europe. We have never attempted to use a Hill-Rom vest in the car thinking the voltage is too high.
  3. S

    Reduce Treatments with Symdeko?

    So is your child on Pulmozyme or Tobi?
  4. S

    Been AWOL but need some 50 PSI Compressor advise

    We bought the InnoSpire Elegance Neb Compressor which states a 44 psi, but it is way slower than our 50 psi.
  5. S

    Monarch Vest Eligibility Question

    I'm guessing the reason my son's was approved is because his current 105 is 10 years old.
  6. S

    Reduce Treatments with Symdeko?

    So for those of you who have been on Symdeko, Orkambi, or Kalydeco, have you been able to reduce any of your neb treatments? My 15yo son just started Symdeko in August. Thank you for any info!
  7. S

    Anti-IgE Test

    Yes for ABPA. My son’s rose for a few years before treatment was necessary.
  8. S

    Do you have ABPA?

    I’m so sorry you’re going through all of this. My 15yo was diagnosed this past July with ABPA. His PFTs dropped to the 50-60s, IgE was 900, and was wheezing past 2 CF quarterly appts. Dr starts watching when IgE is over 500. Have you had that test yet? He started on prednisone and antifungal...
  9. S

    Nebulizer tubes popping off

    Are you talking about the tube popping off the compressor? We had that issue with the Mobilaire until I read about using a zip tie on the end of the tube attached to the compressor. It worked for us as well!
  10. S


    My son is not on that med but when his impacted wisdom teeth needed to be extracted he ended up having to get it done at the hospital. The oral surgeon tried doing it in his office but the sedation was not strong enough and my son kept moving around. We found out at the hospital that since he is...
  11. S

    zythromax long term?

    My son was on 250mg until he turned 10 and then upped to 500mg.
  12. S

    New Sodium Chloride Clinical Trial

    Anyone's child in the new clinical trial for a new sodium chloride neb treatment? DS13 has an appt next week to see if he is eligible. It only lasts 4 weeks: 2 weeks off sodium chloride, and then 2 weeks in the trial for the new med.
  13. S

    how tall are you?how much do you weigh?

    My 13yo son is 5'3 1/2" and 111 lbs. He just went to the doctor this past week.
  14. S


    Sent email!
  15. S

    Anyone else HATE dealing with insurance?

    Yes very much so! My latest challenge was with my son's Creon. They refuse to process the copay assistance on it anymore. They charge $90 whether it's a 1 month or 3 month supply so he only received a 1 month supply since that's what the script was written for in order for them to previously...
  16. S

    Trouble dosing creon help!

    My son started having issues with his enzymes and started taking Prevacid. It helped tremendously. Doctor said people with CF have more acid in their gut so the enzymes weren't that effective because of the excess acid.
  17. S

    CF Parents Survey Company

    Thanks so much everyone! I received 2 gift cards!
  18. S

    CF Parents Survey Company

    Thanks so much! I signed up using Jeff as my referral. My email is if anyone wants to use me as a referral. Thanks, Sharon
  19. S

    Want some TOBI?

    Yvonne, there is a Tobi co-pay assistance program that will pay up to $4000/year. Our co-pay is now $600 since the generic became available, but we pay less than $10.
  20. S

    Pulmozyme Twice a Day

    Thank you everyone for the helpful info. It sounds like it will be worthwhile waking up earlier! He started the extra dose this morning so we will see what happens.