Aany one know ANYTHING about Tracheomalacia?

[Mom to Jordan]

DS almost 14 has a form of tracheomalacia that causes spastic coughing. It is trigered my any number of allergy irritants. He was very premature and this seems to be the cause. He has always been a coughy kid but the real problems have started in the last year. You can not cure the tracheomalacia which is basicly a weak trachia, but you try to contol the triggers. We are on about 8 allergy and asthma meds and are doing pretty well except for school where the old carpet sets him off EVERYDAY. This is not a normal cough and staying in class is not an option. Needless to say he is missing a LOT of school. Most information I found deals with infants and coughing is not a common sympton but the only major sympton DS has. Anyone know anything about this?? He sees a pediatiric pulminologist and we are going back to the major teaching hospitial where we was after he was born next month.

Jordna's mom

 

[Mickey'snewestfan]

I'm not sure how much help I'll be but my son had pretty significant tracheomalacia as an infant and toddler -- coughing was definitely a symptom for him (to give you a sense once he was in my apartment coughing, I was in the other room on the phone with my landlord when he said to me "I already heard your dog, which you aren't allowed to have, but now I hear a DUCK in your apartment?" I thought he was going to kick me out on the spot I had to explain that no, I just had a child with a really bad cough.

One thing that helped us immensely was treating the reflux that underlied both the cough and the tracheomalacia. Kids with chronic coughs and asthma very frequently have untreated/undertreated GERD. Even if the children have allergies that play a role, treating the GERD can make a huge difference -- I'd definitely ask the pediatrician or pulmonologist about having him treated for this.

The second thing I'd say, and now I'm speaking as a special educator, is that the school needs to do something about the carpets. I would get him a 504 (a document under federal law that protects students with non-educational disabilities) that specifies that he needs to be in classrooms that are not carpeted or have carpets that are adequately cleaned, that have HEPA filters in them etc . . . There is no excuse for the school continuing to expose him to this.

One last thought, is whether some of the medications he is on include bronchodilators (e.g. Albuterol, Xopenex). DS's pulmonologist told us that bronchodilators can relax the tissues in the upper airway, while they are relaxing the lungs, and can worsen laryngo/tracheomalacia. You may want to explore with your doctor about whether asthma medications might be playing a role in this.

 

[Mom to Jordan]

It's nice to know that someone else has a "duck" in their family. Thanks for mentioning the reflux. We treated for reflux early on even before diagnosis when nothing was working and that was one of the drugs the dr. dropped as we tried to trim the list of medication. I think i might put him back on and see if that helps.
We do know that albuterol makes him worse. They did a breating treatment of it in the dr office and it was terrible.
Thanks also for bringing up the 504 plan. The biggest problem is there is no way to prove that the carpet is the reason for the triggers even though all signs point that way. The school has been really good but has less knowledge than me in the situation and that is not saying much. It is a very old school and I know it has to be full of mold. We have tried isolation of different areas of the school and isolation of lunchroom food with no results. I need to look into getting a 504 plan in place for the fall. He will be in a differnt building so we hope that helps. We also are doing allergy shots now, mostly for mold even though the allergy test numbers were low.
Thanks for all your input. Hope your little one is doing well.

Jordan's mom