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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...

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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...

Soooo you have hamster-like veins....? :)

It means that certain genetic markers showed up with either being a carrier of cf or having cf. If sweat test numbers come back as high or borderline, then they'll proceed with genetic blood testing to determine what mutations he may have. Newborn screening helps to determine genetic disease...

Have you had cultures done recently? When ds was younger he developed a dry throat clearing cough, which we thought was just a habit, possibly post nasal drip. When he had exacerbations in the past they were usually productive (bronchial type) coughs and at the time he culture either...

With DS we always felt it was important for him to learn how to swim; however, we avoid hot tubs --- higher temps equals more bacteria. That said, the swimming pool he had lessons at was owned by the school system, we knew the manager and how it was run and we knew the county health officer who...

I would doublecheck with your CF doctor to see if you're on the correct meds for whatever infection you have, as well as to make sure it's not pneumonia. Sometimes general practice doctors aren't as attuned to what to listen for with CF lungs. Especially if you, who know your body the best, is...

Great advice both the physical exercises and mental/attitude outlook. My suggestion would be hydrate, hydrate, hydrate. We also do not use the word can't in our house. No excuses. Always at least try. Be consistent in treatments, medications and keep in the habit. I was so tempted to let...

Could be sinus issues, could be caused by allergies. DS' nose never runs because his nasal mucus is extra thick. He does the same thing. Can you get her to try sinus rinses? DS started when he was 4 years old. Or you could try a saline nose spray. DS' ENT does comment that his nose seems...

Our vest is a Hill Rom 105. First Vest he got at age 3 was a Hill Rom 104. This last one lasted 3 1/2 years. I have an online friend whose daughter's is 7 years old, got hers at age 10 months and has over 2200 hours on it. I think the issue is when they send you a new one, it's refurbished...

Got a letter from our CFF rep suggesting trying to meet up with our senators during the 4th of July break.... Here's a portion of it: Advocacy Action Items for the July 4th recess: Find your Senator at a 4th of July parade, picnic, or community event! Ask them for a photo and use that...