Search results

  1. R

    CF Care is out of Network

    How much is the deductible or out of pocket cost if you go out of network? We had similar issues when DS was younger but it was a matter their being an unaccredited clinic in our town and we preferred driving to the City a couple times a year instead and just paid a little extra for office...
  2. R

    Metformin

    He did opt for Metformin rather than insulin as he was heading off to University. He seems to be doing well on it. He tends to have issues after having pasta or drinking more than one soda with sugar. Knows now to drink water or zero calorie. Switching to adult CF care this summer so we'll...
  3. R

    Sad that this particular site is now attracting idiots who just intend to spam it

    I hear you. I'm forever moderating posts -- banning, deleting but never seems to be enough
  4. R

    Baby from Russia

    Our son was diagnosed at birth. Prior to drugs like trikafta, we were very proactive in terms of preventing lung issues. We did chest physiotherapy 3 times a day with nebulizer treatments -- bronciodialtors such as albuterol to keep his lungs healthy. He takes digestive enzymes to help him...
  5. R

    Kaftrio / Trikafta mix up : what to do?

    I don't believe it's that big of a deal. Moving forward, IMO take the correct doses. And set the extra tablets aside in case this happens again. My son once took only one of the morning tablets -- he takes 2 yellow in the morning and blue in the evening. And I believe others have mixed up...
  6. R

    Kalydeco and Sucralose

    Unfortunately there's no such thing as a mild case of cystic fibrosis. It's a progressive, multisystem disease and without being proactive, eventually lungs, sinuses, pancreas and other organs will become affected. While not a cure the correctors such as trikafta and kalydeco will help reduce...
  7. R

    Any info on delta F508/c.2657+2_2657+3insA

    The key with CF is to be proactive. To prevent any potential lung damage or other major issues. Prior to the correctors, we did chest physiotherapy 3-4 times a day to keep DS's lungs healthy and clear of any mucus buildup. He also took/takes a handful of medications and vitamins as well. He...
  8. R

    Sweat test result in child very very low

    I'm not sure how the guidelines are set up now, but ds had a normal 32 and I think 60 was the start of what was considered borderline
  9. R

    negative sweat test..

    I would push for more answers to rule out CF. And if not CF, then what is causing his health issue. The only conclusive determination would be for a blood test. There are over 2000 mutations for cystic fibrosis. While my son has the most common mutation, his sweat test was normal.
  10. R

    Sweat test result in child very very low

    I would push for more answers to rule out CF. And if not CF, then what is causing his health issue. The only conclusive determination would be for a blood test. There are over 2000 mutations for cystic fibrosis. While my son has the most common mutation, his sweat test was normal.
  11. R

    Changes to vitamin levels and enzyme need with modulators

    DS has been on Trikafta for several years and symdeco and orkambi prior to that. He's always had issues with low Vitamin D levels and not only does he take a CF multivitamin, but supplemental vitamin D once a day. Without the supplemental vitamin D, his levels were low. Imagine our surprise...
  12. R

    Albuterol Shortage?

    We were able to get a premixed solution of albuterol. Apparently in the states, nationwide there are shortages of amoxicillin, albuterol, tamiflu, adderall and children's liquid tylenol. DS uses the first two and has a script just in case for tamiflu.
  13. R

    Vertex GPS in the States

    For those of you in the states who have patient support from Vertex GPS for Trikafta, Orkambi and Symdeco, they are changing around the amounts they'll toward deductibles and copays. I encourage you to contact your rep to make sure you're covered for 2023. They've changed how much they'll pay...
  14. R

    Albuterol Shortage?

    Pharmacy indicated they're unable to get regular albuterol in the brown bottle that we use to mix with Hypertonic Saline. Has anyone else had this issue. They asked about substituting with a premix solution which they are able to get, but not sure how that'd work. Imagine we'll just have to...
  15. R

    Orkambi or Trikafta?

    My son started with Orkambi because it was the only corrector available at the time. He benefitted greatly from it in terms of growth, decreased sinus issues, not culturing the same CF bugs (infections) he'd cultured since he was a baby. He switched to Symdeco when that became available and...
  16. R

    Metformin

    Has anyone been prescribed Metformin for issues with blood sugar?
  17. R

    Hypertonic Saline Backordered

    Yikes! DS uses 7%. I've heard from others who indicated they were told there's a shortage due to usage on covid floors. I've seen it available online at a very inflated rate. Guess I'll ask about options when he has an appointment next month.
  18. R

    Hypertonic Saline Backordered

    Anyone else having issues getting hypertonic saline? Pharmacy couldn't get our full order last month due to backordering issues.
  19. R

    Covid booster shots

    I have a couple relatives who caught covid and it wasn't something they recovered from quickly. Close friend of the family died. One (no cf) is a "long-hauler" who suffers from debilitating headaches, brain fog and some neurological side effects. Still has a lingering cough as well. Our...
  20. R

    Covid booster shots

    Signed up my teen for a pfizer booster in a couple weeks. His clinic is in a different state which is only vaccinating individuals over the age of 65; however, our health department has indicated anyone 18 and over with an underlying health condition, senior citizens and individuals working in...
Top