Trachea Malacia

[HuntersmomTBM]

If a dr tells you you have Tracheomalacia you need to be sure to rule out Bronchomalacia. My son was originally clinically dx with Tracheomalacia. It wasn't until he was 10, after he continued to get very sick that they did a sedated rigid AND flexible bronchoscope. His dx changed to Tracheobronchomalacia with Innominate Artery Compression. (IAC is very rare condition that one of his heart artery compresses his trachea ) In order to rule out Tracheomalacia you must have a Sedated Flexible Bronchoscope. In order to rule out Bronchomalacia you must have a Sedate Rigid Bronchoscope. The scope down your nose or throat in the drs office is not enough. I was told, Albuterol and Xopenex although they are great for Asthma they can make malacia worse because they have muscle relaxers in them. We have found that Atrovent via nebulizer works wonders. Now the drs are suggesting a neb treatment of Atrovent followed by a neb treatment of Xopenex. Xopenex opens his upper airway while Atrovent opens the lower. Dr also suggest you rule out GERD/Reflux, Sleep Apnea, keep an eye out for Failure to Thrive.

 

[rarab43]

My son who is 26 was diagnosed with this as an infant. Actually the problems with this led us to being admitted and more testing which led to his CF diagnosis. For two years it gave us much more trouble than CF-his trachea would actually collapse which was awful. He finally outgrew it.

 

[rarab43]

My son who is 26 was diagnosed with this as an infant. Actually the problems with this led us to being admitted and more testing which led to his CF diagnosis. For two years it gave us much more trouble than CF-his trachea would actually collapse which was awful. He finally outgrew it.

 

[Justinsmom]

Hi,

My son Justin had SEVERE laryngomalacia as a baby. He had 2 surgeries by 12 weeks to open up his airways. His would colapse and cause apnea with O2 drops and bradacardia all at the same time. He did outgrow it, although when he had his last bronchoscopy in March (7 1/2 years old) they had a hard time after because he is still floppy and had to have a lot of xopenex to stop the terrible cough as they were doing it and bringing him out of it. I agree it opened up his airways but also relaxed things and it was rough for an hour or so. He also has a strong asthma component to his newly diagnosed CF.

Question: how do you know if small airway "damage" is asthma or first signs of CF damage? Is the difference if xopenex and Simbacourt type med's help?

Thanks and sorry for adding to your post.

 

[Justinsmom]

Hi,

My son Justin had SEVERE laryngomalacia as a baby. He had 2 surgeries by 12 weeks to open up his airways. His would colapse and cause apnea with O2 drops and bradacardia all at the same time. He did outgrow it, although when he had his last bronchoscopy in March (7 1/2 years old) they had a hard time after because he is still floppy and had to have a lot of xopenex to stop the terrible cough as they were doing it and bringing him out of it. I agree it opened up his airways but also relaxed things and it was rough for an hour or so. He also has a strong asthma component to his newly diagnosed CF.

Question: how do you know if small airway "damage" is asthma or first signs of CF damage? Is the difference if xopenex and Simbacourt type med's help?

Thanks and sorry for adding to your post.