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You could check with CF clinics to see if they get samples from drug companies or if they know of anyone who may have switched brands and has a surplus. Unfortunately it is spendy, I just got the receipt for my child's 3 month supply of creon, which was covered by insurance and it was $22,000...

I've heard good things about the Vanderbilt clinic. We're in the midwest and travel to a larger city for a CF Clinic about 250 miles away. We just make a day trip or weekend trip out of it. I have friends in the area who do the same and if their child needs a clean out (IVs) they're able to...

I'm assuming when they cultured everything, they found out what the "bugs" were sensitive to... When DS was a baby he cultured H. Flu and was usually extra snotty and he'd get put on Augmentin for 10-14 days, only to have it come back. His doctor finally wanted to try to get rid of it once and...

DS was on Tobi and then two different generic forms of Tobramycin -- Teva was one of the companies, can't recall the other, but not Bethkis. Didn't notice a difference in any of them.

My son cultured it when he was an infant and we're assuming he got it from the NICU or hospital. He developed a cough to the point he'd cough so hard he'd throw up. I was forever holding him over sinks, the lawn when he'd get a coughing fit. I'd asked his local CF doctor at DS' two month...

Years ago there was a blogger on this site who wrote about using a power inverter --- and having it hardwired to her car so she could vest and commute. https://noexcusesnoexcuses.blogspot.com/search/label/vesting%20in%20the%20car We actually used an inverter and hooked it directly to the...

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. I imagine she'll be starting school soon!

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

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, closer to 2000 mutations for cystic fibrosis. My child passed his sweat test as an infant with...

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 mistakenly assumed I had ordered one too many because they covered them 100% last year. Apparently...

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 kind we usually get. 3M 1870 Surgical Mask N95

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 many nebs he does a day and it was covered by insurance. And I'll admit, I can get the same...

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...

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...

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 was non-forumulary, then we'd at least only have to pay for half.

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 traveling and staying at hotels. I've oftentimes wondered about using a hot pot or electric kettle...

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...

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 necessary. https://www.cff.org/What-is-CF/Testing/Newborn-Screening-for-CF/

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 -- there are over 1500 CF mutations. Being that your child is having issues and you're concerned, I...

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 30 minutes. Pressure at 10 with 5 minutes each starting at 10 hz, 12, 14, 16, 18, 20. If he gets...