Search results

When my kid was diagnosed at birth, I scoured the family genealogy for early deaths and those records went back hundreds of years and other than a stillborn uncle, there's some longevity on both sides. so no family history.

I have noticed my teens hair seems more oily at the end of the day, however, his last class of the day is gym, so could just be that and the combination of throwing on a stocking cap to catch the bus

Sounds like you need a new compressor with the amount of time these machines are used, they don't last all that long. When ds was a baby, it started taking 45-50 minutes then a relative whose child had asthma gave us an older machine and it only took 15-20 so I ordered a new machine seems...

Day 25 for DS. His muscle pain in his back and stomach went away at about 14-15 days. He said when he blows his nose it's much easier to get stuff out. His mucus isn't as sticky. Is able to breathe deeper. In gym class he said he had more stamina and better scoring when they did physical...

I'm sure more genes have been identified in more recent years, but even 10 years ago there were well over 1500. It's just more cost effective to do a sweat test and test for the most common mutations and unless you push for answers, further testing usually isn't done

Day 12 ds had well teen visit and dr indicated stomach and upper/middle back was muscular if it becomes unbearable to contact cf team, but meanwhile heating pad, ibuprofen and staying hydrated he say is feeling better, so powering thru. Also a couple days ago sneezed and some old, hard mucus...

DS has been on Trikafta for 10 days and has been experiencing stomach pain off and on. Hopefully this will pass soon

DS is on day 8 of Trikafta. First day experienced stomach pain and loose stools. Cough increased and he started coughing a little bit of stuff tho has never ever really had a productive cough. A day of throat pain, which I've heard some had and who coughed up tonsil stones. A few days ago...

When ds started orkambi he had a stuffy nose, cold like symptoms and digestive issues. Very loose stools, liquid for several days. Being his main cf symptoms were digestive and sinus and he never really had a cough unless sick, figured that was his purge. When he switched to symdeko he had a...

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...