Laryngomalacia diagnosis?

[ihearttc]

Just wondered if anyone had any experience of Laryngomalacia?

DS2 was 2 months premature but had absolutely no breathing problems-no oxygen or anything. He was always a noisy baby but DS1 was as well (he had to have tonsils/adenoids out at 2 as they were so big) so we sort of expected it. The noise he was making started sounding worse and worse and after googling we came up with the possibility that it might be Laryngomalacia so we mentioned it to GP and neo-natal consultant who agreed and refered him to ENT.

In the meantime he has had a chest x-ray which has come back completely fine(they were worried about the possibility of some problem with his heart causing the noisy breathing) and we've seen ENT people who have said it is most likely Laryngomalacia but the only way to make sure is to have a look down his airways to see whats going on. The problem is that he is now nearly 1 and because he has teeth they apparently can't put the scope down while he's awake so he needs to have a GA which they don't want to do because he is well in himself (or at least he has been well).

Fast forward a few weeks and the noise is getting louder and louder...he is desperately trying to walk and all you can hear is him breathing and almost choking and gagging. He keeps almost trying to clear his throat which is just awful to listen to. He has lost some weight (only about 1/2 pound but he's still tiny and only weighs 18lb anyway) which is very worrying as he eats like a horse.

Im at a loss as to what to do. I want to know what it is and what they can do about it but if they can't (or won't) look then how are they going to know. Don't get me wrong the last thing I want is my precious little boy having an operation but it's tearing me apart having to listen to him like this all day long. Is there anyway they can look by putting a scope down his nose?

ds1's was diagnosed without putting anything down his throat.
they just said it was the most likely diagnosis as his chest x-rays were clear. he had to stay in hospital overnight having his oxygen levels etc monitored, and although they dipped a few times overall he was fine

so they didn't do the scope because they said it would cause unnecessary distress for something they were fairly sure was laryngomalacia and wasn't causing any real problems (aside from the noisiness)

I seem to recall them telling us that it often improves when they wean, and can get worse when they become mobile... that could explain your son's current problems?

I can't say I'd want any of my kids to undergo a G.A unnecessarily, but then DS1's had imprioved a LOT by the time he was a year, so I'm not sure how I'd feel in your position as it's been a long time and you have seen no improvement.

Did they mention that it's something they can operate on?

Thank you for replying...It means a lot to know that someone else understands!

I think he's confusing the doctors bless him because although his breathing was noisy when he was tiny it was not like Laryngomalacia...more like a mucousy nose (if that makes sense?) and he was obviously examined numerous times in NICU and none of the Dr's picked up on anything or in his outpatient appointments. He had to have his tongue tie cut at 7 months and literally overnight he started making the noise...apparently there is no way it can be connected though. So the doctors "think" it's Laryngomalacia but because it's normally apparent very early on and his only really appeared at 7 months they are not convinced.

If it was just the noise I could live with it but it seems to be getting worse and not better (although I didn't realise it could get worse with becoming mobile) but it's distressing him because he keeps almost gagging and swallowing all the time. Weight loss maybe due to him literally being on the move all day long but HV mentioned that it might also be because he's using so much energy to actually breathe poor little man.

There is an operation they can do but they only do it when it's serious...so don't think we're in that situation yet thank goodness.

I suppose I just want to know if it what is it because then it will hopefully get better...and if not then what ever is it!

hmm yeah that does sound a bit odd.

i think if i were you i would take the GA just to get an answer on it.
Beucase if it turns out NOT to be laryngomalacia then it needs further investigating.

it does sound like it is somehow connected to the loosening of his tongue doesn't it (incidentally mine was also tongue tied! as was my second child)

Exactly...I know nothing about anatomy but I assumed the tongue was somehow connected to the larynx so therefore if the tongue was loosened then it's possible it could all be connected but the Dr looked at me as if I was mad when I suggested that! But honestly it was literally not there one day and then there the next...he had it cut without anything (which was fun at 7 months!) so there's no way his larynx could have been damaged by doing it.

Am going to call ENT tomorrow and see if they can bring his appointment forward and see what they can do.