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DS is on orkambi and usually takes it with breakfast and supper. On weekends when he sleeps in he takes it with breakfast/lunch and then has a snack before bed usually a handful of nuts and a glass of whole milk

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...

That was always my concern at our old CF clinic. They would have CF clinic days where all the patients were seen on the same day -- community waiting room, toys, patients heading down to the hospital clinic Xray dept, Lab then the PFT lab, which was a booth. We never went because we were...

I was trying to find the reference, but a couple years ago the Vog mask became popular and I looked into it, but then I saw a statement from the CFF regarding concerns with reusable masks. I guess I'd wonder how one would clean/disinfect a reusable mask.

Yes, yes and yes! When our son was a baby I was forever listening to him sleep at night because his nose would get so stuffed up. We used saline spray/drops and would use a nose syringe to suck out the extra thick boogies. In fact, you know how some kids always seem to have a runny nose? His...

Excellent point about getting out if someone has the flu. A few years ago DH called me from the airport during a business trip indicating one of his coworkers was sick and that he wasn't feeling well and was going to have someone take him either to the hospital or to his parent's house. DS'...

I think the biggy is frequent hand washing. Our son is the one wcf. Everyone in close contact with him have always gotten flu shots. Wash hands or use hand sanitizer when everyone gets home, when they get to the car from the store, before eating out.... When I get a cold, I use hand...

My son was born with a bowel obstruction due to meconium illeus. He spent 6 weeks in hospital where a doctor suspected cf and sent in blood for a basic panel. There wasn't newborn screening at the time. No family history. His sweat test at 3 weeks was 37 and he wasn't very salty. Later on...

I agree. I used the talking points from the CFF letter, added individual info and tada, two faxes sent. Especially easy to use the voice to text feature on my phone, so I dictated my info. While I've called and emailed, this is another tool in the toolbox. Especially for those of us who...

With DS, his doctor was never concerned with salt intake as long as he also had plenty to drink. His daycare kept the kids very active -- they walked everywhere, participated in sports, bike rides, sledding --- and they either provided him with crackers or pretzels or his preference was taking...

Friends, text RESIST to 50409 to send a letter to your representatives. This is a free and legitimate service that will send a letter to your Senators.

Definitely sounds like dehydration. I know some athletes take Salt Tablets --- I order the Salt Stick brand for my husband & cousin (No CF) during the summer when they participate in a cross country old car rally.

Got the following phone script to use from our CFF Rep. Graham-Cassidy Bill Phone Script Call (202)517-8215 Hello, my name is [your name here] and I am a constituent of the Senator. I am calling in opposition to the Graham-Cassidy bill, as it does not protect people with cystic fibrosis...

Sweat tests can fluctuate based on who conducts the testing. In the states it's recommended a test be done at an accredited CF facility. In my son's case, he was tested as an infant at a CF Facility and had a result of a 37. Apparently it's very difficult to get an accurate read on teeny tiny...

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...

Awesome! With us, we realized DS was breathing thru his nose quietly while he slept. Wasn't mouth breathing, didn't do that cough laugh or cough if he spoke too fast. And then came the growth. 12 years of struggling with weight, with him slipping on the growth percentile charts, struggling...

I work with a lot of people who like to show up for work sick. Blech! I think the biggies are wash your hands, don't touch your face.. I use hand sanitizer at work when I sit down at my desk after entering the building (touching door knobs, time clock, copier...) I use it after handling...

He was diagnosed a few days after he was born because he was born with a bowel obstruction. Meconium Illeus and required surgery. A doctor suspected CF based on that an ordered a basic genetic test from Mayo, which tested for the most common mutations. What seemed odd to us and made us doubt...

You could ask to have them re-test your mutations or do a sweat test. The fact that you've cultured pseudo in the past, have digestive issues, asthma leads me to think that you do have CF. DS has mostly sinus and digestive issues. He did tend to culture common cf bugs early on ---- pseudo...

That is so awesome! We're still working with our 14-year old. He knows enough when I've forgotten something, knows how to prep his nebs and how many enzymes to take. Just in the past few years we've felt comfortable leaving him with his grandparents and he just asked when we were leaving town...