Tracheomalacia

Shawna - posted on 03/23/2014 ( no moms have responded yet )

2

0

0

Has anyone out there ever had a child with tracheomalasia who never had the strider sound or really any outwardly symptoms? My baby is 15 months old and has all the signs of tracheomalasia with reoccurring pneumonias since she was 2 months old. She is an otherwise healthy baby who is in the normal weight range and very happy child. She has been tested for CF, immune deficiencies and several other things which turned out normal. Each time she gets sick with a virus we have to do CPT (bop her) and suction her nose or the coughing won't stop. We also use atrovent which helps. We try not to let her cry much because it sounds like a waterfall to her lungs. The congestion starts back up until she coughs it up. (Sometimes we have to bop her or give her atrovent) She has had tons of ear infections and her sinuses are completely filled up with junk. We are getting ready to do a bronchoscopy, endoscopy, pull her addenoids out and replace her ear tubes. We have went to 4 ENT drs and this one mentioned tracheomalasia for the first time. After reading up about this I realize we were doing all the wrong things with feedings, viruses, etc! I wish we have known this was a possibility Bc we could have started being extra careful when she was born and would have closely monitored every feeding move etc. We didn't even start thickening her bottles until 11 months old and started the CPT Bc she had middle right lobe syndrome from all the secretions and possible liquid aspirations being caught in there. Unfortunately she appeared so healthy on the outside, even during the pneomonias that no one ever considered tracheomalasia.
She also coughs through the night until we bop her, sit her upright, etc. She does have the "barky" cough often and usually by making her sleep on our shoulders or using saline drops to loosen the mucus so we can suction, tends to get the cough under control. This is extremely intensified during a virus...other than the usual drainage the nights aren't too bad. Feedings are fine as long as she sits straight up. If she leans then the coughing may start for a bit and subside after a while.
She has very mild outwardly sx of tracheomalacia according to everything I read, yet has more serious symptoms from an internal perspective, which is why I think this hasn't been suggested until now. However the lungs have been a prime target and this is why it appears to me to be pretty serious. I'm praying she outgrows it by age 2 but more so I really hope we get a proper diagnosis. Has anyone seen tracheomalasia manifest like this yet having no strider or serious breathing problem sound present(other than rattly congestion occasionally)t? And also have any of you had a child who was diagnosed later in childhood with tracheomalasia, simply Bc the "normal" symptoms such as the strider wasn't present?

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms