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Type: Posts; User: Ratatosk

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  1. Replies
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    I know this is spendy.... $200+ but Bose makes...

    I know this is spendy.... $200+ but Bose makes sleep buds for people who live with loud snorers. Not sure if they would do the trick, if it's the noise that wakes her up or the motion. My...
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    Got the replacement vest just in time. Vest was...

    Got the replacement vest just in time. Vest was stopping several times during treatment and I'd have to unplug it. Must've been having issues for a while -- I'd noticed it sounded different, but...
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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. ...
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    Interesting... They indicated they (vertex)...

    Interesting... They indicated they (vertex) didn't consider the elevated liver enzymes (ALT) a concern or reportable until they reached 3 times the normal rate. DS' results had doubled, but weren'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...
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    Hopefully you can get some answers. We had so...

    Hopefully you can get some answers. We had so many confusing test results at first --- not a large enough sample obtained for both blood and sweat tests, then the normal sweat test, so despite DS'...
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    Do they do newborn screening in your area? DS...

    Do they do newborn screening in your area? DS was born with meconium ileus and required bowel surgery when he was a day old. Because of his symptoms, a doctor at the local hospital requested a...
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    This is great! DS just got his schedule for...

    This is great! DS just got his schedule for school and he didn't get into his intro to Java Programming class, so we're looking for other alternatives.
  9. There is a family that I believe is active in the...

    There is a family that I believe is active in the Chatanooga branch of the Cystic Fibrosis Foundation CFF.org The mom's name is Ginger and they have a little boy wcf.
  10. DS started Orkambi 4 years ago and grew...

    DS started Orkambi 4 years ago and grew significantly. We'd struggled with weight since he was an infant, barely meeting 50th percentile for weight despite the high fat high calorie foods he ate. ...
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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...
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    A friend of mine's daughter was on insulin when...

    A friend of mine's daughter was on insulin when she first started puberty to insure growth, deal with hormonal changes... She didn't necessarily have IGT, she did NOT of CFRD, but I believe her...
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    There's something to be said about an earlier...

    There's something to be said about an earlier diagnosis and being proactive to minimize lung issues; however, if it is CF, one can't worry about what ifs or what they should've done knowing what they...
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    Thru my pharmacy, though I need a prescription. ...

    Thru my pharmacy, though I need a prescription. Haven't been able to find otc online.
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    You could check with CF clinics to see if they...

    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...
  16. I've heard good things about the Vanderbilt...

    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...
  17. I'm assuming when they cultured everything, they...

    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...
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    DS was on Tobi and then two different generic...

    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.
  19. My son cultured it when he was an infant and...

    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...
  20. Years ago there was a blogger on this site who...

    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. ...
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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
  23. 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,...
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    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...
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