Hi everyone!

I'm wondering if anyone has any ideas about this. My 4.5 year old has a CRMS dx (1 classic CF mutation, 1 rare variable mutation, low sweat score). About 5-6 months ago I started noticing that he has a pretty prominent tracheal tug from the simplest things like talking more than 1 sentence at a time, minimal exertion etc. I brought it up at his last clinic visit earlier this month. They felt like it's not lung related - maybe more his vocal chords or his sinuses+reactive airway causing the issue. They did not think it warranted them doing a bronchoscopy but they recommended I mention to his ENT and that she may need to do a scope of his upper airways. We just saw ENT this week and I showed her a video of the tug. She said it's absolutely not normal but she feels like it seems as though he's out of breath. She actually thinks pulmonary SHOULD do a bronch and she should tag along to that procedure and do an upper scope in addition. Her read is that it's more likely lung than sinus/throat related. She is supposed to have discussed his situation with them this week and I'm waiting to hear what they think. Basically she left it as she is right on the border of should we scope because other than the tug and some breathlessness when talking he seems pretty ok lately.

In the meantime I've been trying to find any information on what would cause a tug like this to happen. It's daily - but when he's calm his breathing is fine. Lungs sound fine to pulmonary. He had a bronch when he was 1.5 years old which showed no structural abnormalities but did show a major obstruction from inflammation at that time - we've been treating him with daily inhaled steroids since for this issue. He does not appear to have asthma (based on minimal reaction to albuterol and no classic symptoms) but he does have a reactive airway. He also has constant rhinitis and a history of sinus infections. No allergies. And a sinus CT also was clear for structural issues but showed moderate mucosal thickening in his maxillary sinuses (which basically just kind of confirmed that he has the constant rhinitis). Currently he's not on a full CF protocol (because his dx is still CRMS) but he does albuterol as needed, Alvesco 2x daily, sinus rinses and nose spray daily.

Has anyone ever encountered something like this? He does not seem in distress at all when he's calm. And his o2 sats are perfect. But literally anytime he talks I'm seeing that tug. My concern is that his obstruction is out of control again but with pulmonary seeming to think he's doing well lung wise I'm thinking it's equally possible that I'm just over reacting.