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Ds had a normal sweat test at 3 weeks, but was born with a bowel obstruction and genetic tests indicated cf. his symptoms were mainly digestive and sinus. He started enzymes right away, but still had digestive issues. Frequent, loose stools. We managed to keep his weight at 50th percentile...

My teen has had the vest since he was three years old. Prior to that we did manual cpt. He does his vest 3 times a day, more if he's sick. He plays video games, watches tv, plays on his laptop....

https://www.fda.gov/news-events/press-announcements/fda-approves-new-breakthrough-therapy-cystic-fibrosis

Thanks for your response. Something to keep in mind. He tends to take awhile to recover from stomach bugs. I've heard norovirus is going around. Fortunately he bounced back after a few doses of MoM

It's just been such an incredibly long time since we've had to deal with something like this. Still stooling, albeit harder ones and stomach discomfort due to distention, at least until tonight when the mom kicked in. Last time he had a stomach bug it took him a couple weeks before he was back...

DS had a stomach bug last weekend and when this usually happened he'd have very loose stools in the weeks that followed along with decreased appetite and some vomiting. This is the first time it's happens since being on orkambi or now symdeko. He recovered fairly quickly, but complains of dull...

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 husband's cousin's wife swears by them. They're like noise cancelling ear buds but you wear them to...

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 based on the number of hours logged on it, there were minor issues. Log showed 275.8 hours total...

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. Sigh! New one being sent for delivery tomorrow. Fingers crossed it'll keep working and I won't...

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 quite double the normal rate. Usually his are upper 20s, high being 55. His elevated were 89...

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 doctors aren't concerned unless it's double the high range and I guess we'd heard/thought Symdeko had...

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' obvious symptoms, there were always questions in the back of my mind. Would be nice if they...

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 basic genetic screen -- 99 of the most common mutations from Mayo. When he had his sweat test at 3...

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.

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.

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. If not for cf, the doctors would be after him to lose weight. Breathes much quieter while...

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 things to keep him healthy --- his enzymes, that he may need for water/salt on hotter days...

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 clinic had her on a small amount of insulin to help get over the stresses of puberty. She's no...

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 know now. One can only move forward. Being your child has had lung infections, loose stools...

Thru my pharmacy, though I need a prescription. Haven't been able to find otc online.