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  1. R

    Trikafta and liver disease

    My teen was put on actigall/urisidiol when he was a newborn in the NICU because of raised liver levels when he was on TPN (IV Feeds). His doctor kept him on it, also helps with gallbladder issues. When he started symdeko his cf doctor started to remove different drugs, since he was doing so...
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    Portable Nebulizers

    Wondering if anyone has used a portable nebulizer like a devilbiss or pari trek. DS has a monarch vest and sometimes he likes to wander when using it. He's mostly on hypersal and pulmozyme once a day, so it wouldn't be used all that intensely.
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    Liver Enzymes and CFTR Modulators?

    Not that high, but my teen's were elevated. Went from mid-normal, to high. We were told not to be concerned until three times above normal. His doctor had taken him off actigall which he'd been on since birth when he was doing so well on the correctors so we asked he be put back on actigall...
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    Getting back to normal

    It's the new normal and uncertainty that gets to me. Despite being in a hotspot, they've opened up restaurants, bars, salons and gyms and people are acting as if it's all over. I think once a vaccine is found and readily available, that will alleviate my concerns but currently am anxious...
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    Acne increase on Trikafta

    His was horribly red cystic acne on his nose and I was going to use otc hydrocortisone due to inflammation, but then finally got into the dermatologist. fingers crossed. Benzoyl peroxide wash and oral abx seem to be working so far.
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    Acne increase on Trikafta

    Our teen started having issues with cystic acne, mostly on his nose about a month after starting Trikafta. He had a couple concerning ones that would burst. CF Doctor hadn't heard of acne being a side effect. Made a Derm appointment but getting in was several months out. Meanwhile, tried OTC...
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    Precision Medical Easy Comp 50 psi Compressor Loud

    realize this is an old post... But we never did find a solution to why the compressor got so hot & last few days I noticed the pressure was turned way up, but didn't seem to maintain up to 25-30 on gauge. Was going to have hubby check it out, meanwhile changed filter. Thought machine was...
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    I now have two children with CF, advice please

    He's 16 years old. Busy high school sophomore --- band, trapshooting team... Primarily had digestive issues to start. Severely pancreatic insufficient. Struggled to get him to eat, so we were always pushing extra calories. We still keep the treatment routine. With Orkambi he went thru...
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    I now have two children with CF, advice please

    My son was diagnosed shortly after birth and it was a very overwhelming time. While we have just one child I'd suggest getting into a routine in terms of treatments, medications, eating.... Just one step at a time. Write questions down for clinic appointments, write info down during...
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    Eyes Burning on Trikafta

    Again, ds had initial symptoms which went away, but he did use my contact rewetting drops. As someone myself who has issues with dry eyes (no cf) it does help to use warm compresses to help open those tiny tear ducts that may be plugged. My eye doctor suggested doing this
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    Exercise and Trikafta

    My teen has indicated he is able to breath deeper, better stamina during his phy ed classes.
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    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....
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    Eyes Burning on Trikafta

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