laryngotracheomalacia

[Anonymous]

Has anyone heard of laryngotracheomalacia? My baby has had a stridor since 4 weeks and the doctor said it’s this condition where her trachea is underdeveloped. He said that it will get better by itself within the first year and there is nothing we can do to help it along.

She’s five months now and it’s not getting better. In fact, sometimes I feel that it’s worse. I can’t seem to find any literature on the condition either so I’m not sure if I trust my doctor’s recommendation. Have any of you heard of anything regarding this?

Thanks!

[Anonymous]

There have been a few babies on the board with “malacias” but I don’t know much about them at all. I’ll see if I can find some of the threads for you.

https://www.infantreflux.org/forum/search.asp?KW=malacia& SM=1&SI=TC&FM=0&OB=1

Maybe some of these threads will help you.

[Anonymous]

My daughter had this as well. You might not be able to find any literature on it, because your doc has lumped two conditions together: laryngomalacia and tracheomalacia. You’ll find more info if you search for them separately.

My daughter had these, she outgrew it somewhere during her first year even though her reflux has persisted. She also had terrible stridor that was scary at times. She doesn’t have any of those symptoms anymore (stridor, noisy snory breathing etc) just the reflux. I’m not sure if your son has reflux or not, but we were told that the reflux and the malacias play off each other in that the reflux causes the trachea and the larynx to become more irritated and inflamed making the stridor worse, like a cycle somehow.

You can ask to see an ENT if you’re concerned. We never did and Hailey outgrew it, but I can’t remember when.

PS- nice to see another Canadian around here. Good luck. I’ve attached a few links for you.

http://www.drhull.com/EncyMaster/L/laryngomalacia.html

http://www.virtualpediatrichospital.org/providers/ElectricAi rway/Text/TracheoLaryngo.shtml

[Anonymous]

Thanks for the replies. s&h’s mom, did your daughter just outgrow it without you doing anything to help it along? I feel like I need to do something for my daughter. The breathing noise is quite loud at times and she even snores at night…. not sure if it’s related. She had bad reflux when she was a newborn but seemed to grow out of it at 2 months. Bye the way, what’s an “ENT”?

Thanks

[Anonymous]

ENT= ear nose and throat specialist

Yes, Hailey just outrew it. I think that controlling her reflux helped a bit, and then the rest was just time. Her snoring at night and sometimes when awake during the day was also bad. The stridor squeeking was awful. Does she still make the high pitched stridor sound?

[Anonymous]

Yes, my daughter does make the stridor sound. It sounds like she can hardly breath but she doesn’t appear distressed. Thanks for the links. My doc made it sound like it was so common and absolutely nothing to be concerned about but from what I have read here, there are some risks to the condition. Would an ENT be the right specialty to ask for? I don’t want to put the baby through any undue tests but I just don’t feel confortable with my doc’s responses.

[Anonymous]

Whereabouts in Canada are you?

Our doc said the same thing, and for Hailey, she did outgrow it. I think because her reflux was so bad I’ve been so focussed on fixing that problem that I didn’t focus as much on the stridor etc. When she was small, I was really worried about it, but then it really just did disappear. I’m pretty sure that the ENT is the right person to ask for. We’re seeing our ENT on Monday (to check on her ear tubes, not related to stridor), but I can ask if that’s the right type of professional for you to see, but I’m pretty sure it is.

As for tests, I agree that they stink (as do waiting for hours at these docs appointments) but I find that having answers gives me some peace of mind, and has been helpful for us that way. Good luck.

[Anonymous]

We’re in the Toronto area. Where are you? That would be very helpful actually if you were to ask the ENT if he deals with this sort of thing. Or would it be a respiratory specialist? I would feel so much better if I knew that that she is not at risk for other complications as a result of her “malacia”. I really do hope that it just goes away as you said and doesn’t have any other trailing effects.

Thanks for your help 🙂

[Anonymous]

We’re also in TO (Thornhill actually). I don’t know which one for sure, but I’ll ask on Monday.

[Anonymous]

My daughter has laryngomalacia..she too has stridor, has since birth. I was beside myself with worry about her stridor before she was diagnosed. My daughters pulminologist says that the laryngomalacia makes the reflux worse and the other way around. It’s aweful having 2 conditions like that.

[Anonymous]

My son, Kaiden was also diagnosed with laryngotrachiamalacia when he was two weeks of age. He was put on an apnea monitor which helped me to better monitor his breathing and heart rates, especially when he would sleep. Kaiden also was diagnosed with a rare congenital heart defect when he was about two and a half months old and had to have heart surgery to correct that. Kaiden is now two years and four months old and still suffers from his malacias. He is strictily a G-Tube baby and has reoccurring respiratory infections such as R.S.V., pneumonia, and croup. While the stridor sound did eventually go away, he still has “junky” or “noisy” breathing. We are currently being referred to another children’s hospital where they have the ability to run different tests and have better specialists in this field. I understand what you are going through and would love it if you can find the time to respond to this post. I hope your daughter’s condition has improved. God Bless you and yours.

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