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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

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.

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.

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...

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.

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...

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...

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...

Has anyone been prescribed Metformin for issues with blood sugar?

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.

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

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...

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...

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?

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...

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.

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...

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...

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.

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...