Search results

  1. R

    Exercise and Trikafta

    My teen has indicated he is able to breath deeper, better stamina during his phy ed classes.
  2. R

    Eyes Burning on Trikafta

    Could be a correlation between sinuses, tear ducts, etc. No CF here, but I have sinus issues and have had plugged tear ducts, dry eyes in which my eyes will water uncontrollable. Eye doctor recommends warm compresses to open things up. Seems to help....
  3. R

    Eyes Burning on Trikafta

    DS had this initially and used some rewetting drops, but hasn't had issues since.
  4. R

    Symkevi and liver function

    My teen had been on Actigall (Urisidiol) since he was an infant due to higher liver function test results. Since he was doing well on Symdeko, his doctor peeled back some of his medications and vitamins. Vitamin A & E levels were normal, so removed that (still on a multivitamin). Stopped...
  5. R

    Trikafta Q&A, Experiences, etc.

    Noticed my teens nose has had more breakouts, a couple larger blemishes. Areas of his skin that have always been a bit oilier have increased.
  6. R

    New Year New insurance new PA process

    So for the 2nd time in as many months, due to insurance changes, we've gotten through the prior approval process. This time he's approved for Trikafta for a year. Didn't miss any doses, down to a one week supply, but was approved a couple days ago and overnighted to us. Word of advice...when...
  7. R

    New Year New insurance new PA process

    Just a reminder for those in the states to double check that your insurance isn't requiring you to go thru the prior authorization process. A few years ago I got caught off guard when I went to refill ds' Orkambi only to find despite my insurance not changing, we needed to go thru the pa...
  8. R

    Cystic Fibrosis research project

    When my kid was diagnosed at birth, I scoured the family genealogy for early deaths and those records went back hundreds of years and other than a stillborn uncle, there's some longevity on both sides. so no family history.
  9. R

    Trikafta Q&A, Experiences, etc.

    I have noticed my teens hair seems more oily at the end of the day, however, his last class of the day is gym, so could just be that and the combination of throwing on a stocking cap to catch the bus
  10. R

    Treatment time tobramycin

    Sounds like you need a new compressor with the amount of time these machines are used, they don't last all that long. When ds was a baby, it started taking 45-50 minutes then a relative whose child had asthma gave us an older machine and it only took 15-20 so I ordered a new machine seems...
  11. R

    Trikafta Q&A, Experiences, etc.

    Day 25 for DS. His muscle pain in his back and stomach went away at about 14-15 days. He said when he blows his nose it's much easier to get stuff out. His mucus isn't as sticky. Is able to breathe deeper. In gym class he said he had more stamina and better scoring when they did physical...
  12. R

    9 years since borderline sweat & 1 gene mutation found. Retest??

    I'm sure more genes have been identified in more recent years, but even 10 years ago there were well over 1500. It's just more cost effective to do a sweat test and test for the most common mutations and unless you push for answers, further testing usually isn't done
  13. R

    Trikafta Q&A, Experiences, etc.

    Day 12 ds had well teen visit and dr indicated stomach and upper/middle back was muscular if it becomes unbearable to contact cf team, but meanwhile heating pad, ibuprofen and staying hydrated he say is feeling better, so powering thru. Also a couple days ago sneezed and some old, hard mucus...
  14. R

    Trikafta Q&A, Experiences, etc.

    DS has been on Trikafta for 10 days and has been experiencing stomach pain off and on. Hopefully this will pass soon
  15. R

    Trikafta with no purge???

    DS is on day 8 of Trikafta. First day experienced stomach pain and loose stools. Cough increased and he started coughing a little bit of stuff tho has never ever really had a productive cough. A day of throat pain, which I've heard some had and who coughed up tonsil stones. A few days ago...
  16. R

    FDA Approves Triple Combo - Trikafta
  17. R


    DS had a stomach bug last weekend and when this usually happened he'd have very loose stools in the weeks that followed along with decreased appetite and some vomiting. This is the first time it's happens since being on orkambi or now symdeko. He recovered fairly quickly, but complains of dull...
  18. R

    Vest Error Code - Always on a weekend

    This past weekend, DS' vest has once again started sounding different and been throwing error codes about 5 minutes before treatment time should end. The company replaced it just one year ago. Sigh! New one being sent for delivery tomorrow. Fingers crossed it'll keep working and I won't...
  19. R

    Update - ALT Results

    DS has been on Symdeko for about a year and last winter his ALT was elevated. While he was on Orkambi, he had liver function tests every few months the first year, which were normal. Apparently doctors aren't concerned unless it's double the high range and I guess we'd heard/thought Symdeko had...
  20. R

    Back to school

    It's that time of year again... I usually send a brief note to the school nurse or counselor explaining DS has CF, indicating he first and foremost is a normal child who just needs a couple extra things to keep him healthy --- his enzymes, that he may need for water/salt on hotter days...