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realize this is an old post... But we never did find a solution to why the compressor got so hot & last few days I noticed the pressure was turned way up, but didn't seem to maintain up to 25-30 on gauge. Was going to have hubby check it out, meanwhile changed filter. Thought machine was...

He's 16 years old. Busy high school sophomore --- band, trapshooting team... Primarily had digestive issues to start. Severely pancreatic insufficient. Struggled to get him to eat, so we were always pushing extra calories. We still keep the treatment routine. With Orkambi he went thru...

My son was diagnosed shortly after birth and it was a very overwhelming time. While we have just one child I'd suggest getting into a routine in terms of treatments, medications, eating.... Just one step at a time. Write questions down for clinic appointments, write info down during...

Again, ds had initial symptoms which went away, but he did use my contact rewetting drops. As someone myself who has issues with dry eyes (no cf) it does help to use warm compresses to help open those tiny tear ducts that may be plugged. My eye doctor suggested doing this

My teen has indicated he is able to breath deeper, better stamina during his phy ed classes.

Could be a correlation between sinuses, tear ducts, etc. No CF here, but I have sinus issues and have had plugged tear ducts, dry eyes in which my eyes will water uncontrollable. Eye doctor recommends warm compresses to open things up. Seems to help....

DS had this initially and used some rewetting drops, but hasn't had issues since.

My teen had been on Actigall (Urisidiol) since he was an infant due to higher liver function test results. Since he was doing well on Symdeko, his doctor peeled back some of his medications and vitamins. Vitamin A & E levels were normal, so removed that (still on a multivitamin). Stopped...

Noticed my teens nose has had more breakouts, a couple larger blemishes. Areas of his skin that have always been a bit oilier have increased.

So for the 2nd time in as many months, due to insurance changes, we've gotten through the prior approval process. This time he's approved for Trikafta for a year. Didn't miss any doses, down to a one week supply, but was approved a couple days ago and overnighted to us. Word of advice...when...

Just a reminder for those in the states to double check that your insurance isn't requiring you to go thru the prior authorization process. A few years ago I got caught off guard when I went to refill ds' Orkambi only to find despite my insurance not changing, we needed to go thru the pa...

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...