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Type: Posts; User: Ratatosk

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  1. Replies
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    Welcome back! Glad to hear your daughter is...

    Welcome back! Glad to hear your daughter is doing so well and that you're being proactive with treatments! CF can be such a sneaky, progressive disease, so it's important to stay on top of things. ...
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    Sticky: Using Google Translate: This message is a little...

    Using Google Translate: This message is a little old. But if you're still here, give me a sign. And we are from Bucharest and one of the mutations is W1282X
  3. Thread: Advice

    by Ratatosk
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    I'd be curious to find out how many mutations...

    I'd be curious to find out how many mutations they actually tested you for. A lot of times after a sweat test, they'll only test for the most common mutations -- 30 to 100 when there are over 1500,...
  4. Just a little update on our non-covered nebulizer...

    Just a little update on our non-covered nebulizer cup drama. Just got a statement of benefits from insurance showing why they denied the request and included ALL neb cups ordered this year. I...
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    I don't even like taking the ones at the clinic...

    I don't even like taking the ones at the clinic from the dispenser and bring our own. With the quote from the CF Foundation, we'd never, ever use a reusable mask. We use disposable ones -- this is...
  6. I think I'll just go back to paying out of...

    I think I'll just go back to paying out of pocket. It's what I do with the disposable ones when we travel. Last year, since we'd met our out of pocket deductible, I ordered up 6 because that's how...
  7. 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...
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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...
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    Yes, he does hypersal three times a day. Once we...

    Yes, he does hypersal three times a day. Once we hit our $2700 out of pocket max for medical care, we don't have to pay copays UNLESS, which is the case the drug is considered non-covered. If it...
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    Only issue with a baby bottle sterilizer would be...

    Only issue with a baby bottle sterilizer would be to make sure they reach optimum temperture for sterilization. I know years ago someone posted about using a deep fat fryer to boil nebs when...
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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...
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    Newborn screening doesn't test for specific...

    Newborn screening doesn't test for specific mutations but for elevated irt levels. If elevated, they retest and after that usually order a sweat test before deciding if testing for mutations is...
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    Did they actually test for genes after they...

    Did they actually test for genes after they rescreened, and if so, how many mutations did they test for? When DS was tested, I believe they only tested for a handful of the most common mutations --...
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    A lot of people use the Minnesota protocol...

    A lot of people use the Minnesota protocol developed by U of Minn's CF clinic. https://chw.org/-/media/publication-media-library/2017/08/09/19/04/1245en.pdf My kid does 3 vest treatments a day for...
  15. Yes, it's a hill rom 105. Brand new vests from...

    Yes, it's a hill rom 105. Brand new vests from hill rom have a lifetime warranty, ds has had a vest for about 12 years. And I think they've replaced it 4 times for sure, soon to 5.
  16. So my teen's vest stopped working tonight,...

    So my teen's vest stopped working tonight, wouldn't inflate properly. Pulled out the manual to call for a replacement and it said the machine should last about two years.
  17. DS' first brand new vest lasted about 3-4 years. ...

    DS' first brand new vest lasted about 3-4 years. Since it was new and had a lifetime warranty, Hill Rom replaced it. I suspect the replacements are refurbished. Nowdays they seem to last about 2...
  18. I seem to recall once upon a time someone using a...

    I seem to recall once upon a time someone using a sinus nebulizer. Looked like a regular pari compressor and neb cup one held up to their noses. Also previous posts on putting tobramycin in a sinus...
  19. 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)...
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    Hopefully your clinic will get back to you with...

    Hopefully your clinic will get back to you with some advice. I'm assuming the child isn't vaccinated due to personal reasons and the parents are using the religion card to get an exemption and not...
  21. With DS, his doctor indicated his baseline should...

    With DS, his doctor indicated his baseline should be no cough. We were proactive and did chest physiotherapy. Mainly his symptoms were digestive and sinus, although he DID culture pseudomonas right...
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    I don't have any information on your son's...

    I don't have any information on your son's mutations...I'm assuming what the doctor meant by "not turning into CF" was that they may not be symptomatic mutations. Is this doctor a CF doctor? If...
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    I hear you. Our primary pharmacist is a relative...

    I hear you. Our primary pharmacist is a relative and for awhile he was a specialty pharmacist, but the hoops they made him jump thru were just too much, so we had to switch the pulmozyme and tobi to...
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    Has your GP run any CF cultures? The biggy would...

    Has your GP run any CF cultures? The biggy would be if you're culturing pseudo, or enterbactor choclae or any other bug that is sensitive to tobi. I'd think that would be an easy way to prove you...
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    When DS seems to have issues, we increase chest...

    When DS seems to have issues, we increase chest physiotherapy (cpt). We normally do 3 breathing and vest/cpt treatments a day, but will increase to 4-5 if need be. We also will focus manual...
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