Recent content by Ratatosk

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    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...
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    Metformin

    Has anyone been prescribed Metformin for issues with blood sugar?
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    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.
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    Hypertonic Saline Backordered

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

    My teen wcf is going to be a senior next year. He's planning to attend a school in another City albeit a couple hours away... What suggestions do people have with college life? Room arrangements --- single room ? sterilizing nebs? treatments? medication storage?
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    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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