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  1. R

    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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    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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    FDA Approves Triple Combo - Trikafta

    https://www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cystic-fibrosis
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    Constipation

    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...
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    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...
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    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...
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    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...
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    Nebulizer Cup Not Covered Under Insurance

    I'm thinking this has to be an error or a glitch because this is so ridiculous... I figured when I got a bill, it was because our insurance gave us new cards with new numbers. I'd also gotten a statement of benefits indicating the clinic had used the old number. So I called and made sure...
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    Symdeko Update

    Our teen has been on Symdeko since last August. He'd done well on Orkambi for two years, but wanted to try Symdeko. He's continued growing -- prior to either med we struggled with maintaining weight, barely 50th percentile. He's now probably considered a tad overweight. So no more cream or...
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    Hypertonic Saline Non-Covered Medication

    DS' doctor switched him from Atrovent/Albuterol nebs to Hypertonic Saline/Albuterol last Fall and it's not covered under our insurance. So it's $33 every 20 days since he does treatments three times a day. It's just annoying that other, more expensive medications are covered, but not this...
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    Hypersal/Hypertonic Saline not covered by insurance

    DS' doctor prescribed 7% sodium chloride for inhalation last fall with his albuterol. Previously he'd been on albuterol/atrovent nebs. They eliminated the atrovent. Seems like insurance (BCBS) doesn't cover hypertonic saline -- it's a noncovered, nonformulary prescription and therefore it...
  12. R

    Precision Medical Easy Comp 50 psi Compressor Loud

    Pulled the trigger on a 50 psi compressor after our Invacare mobilaire started having issues. The new one is so flipping loud. Am going to contact the company, but wondered if this is the nature of the compressor and something we just need to live with. The other issue is I can't keep it on...
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    Monarch Vest Eligibility Question

    DS was denied coverage for the new Monarch vest because he has an existing vest, is doing well and because they won't cover a new vest based on convenience or new technology. Curious how others are able to get theirs covered. I've seen several individuals on social media with Monarch vests who...
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    Nebulizers for Travel

    At home we use a 50 psi compressor for everyday use; however, on the rare occasions we travel or during the weekend at the family lake cottage we use a pari vios or an Philips respironics (sp) that we got from the DME when our last Devilbiss Pulmoaide gave up the ghost. The pari is starting to...
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    Dry Cough/Symdeko

    Has anyone experienced a dry/nonproductive cough on Symdecko? DS has been on it for about a month, ended up with a head cold a week or so after starting it. Had some residual sinus issues, which he does sinus rinses for to clear the crud. No I'm not sure if he's getting yet another cold or...
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    Orkambi Approved for Ages 2-5

    https://cysticfibrosisnewstoday.com/2018/08/08/fda-approves-orkambi-first-medicine-treat-cf-children-ages-2-older/
  17. R

    Anti-IgE Test

    DS' doctor retired and we're now attending a new CF Clinic and a few new labs were ordered. Got most of them figured out --- an additional liver test, the usual vitamin levels, glucose, immunoglobulin... However, on test that I couldn't find any info on, was Anti-IgE, which was shown just as...
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    Nebulizer tubes popping off

    I just switched out neb cups and tubing -- we use reusable Pari LC's and the tube keeps popping off despite medicine still being in the cup. This usually only happens if the neb runs dry or there's a crimp. I use the pari tubing on our Invacare mobilare compressor because I've found the tubing...
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    Discontinuing Ursodiol (Actigall)

    Recently switched DS to a new CF clinic after his doctor retired and one of the suggestions was to discontinue actigall. DS was put on it as an infant due to elevated liver levels when he was on TPN recovering from surgery due to meconium ileus. At the time the doctors indicated it was the...
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    After 1879 hours DS' Vest is Kaput

    Out of the blue at 11:30 pm last night, DS's vest was no more. Came downstairs to see a call for service message with an error code. Tried plugging and unplugging to no avail. Left a message for the Vest provider which had since closed. Sigh. And they never called back, so I contacted...
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