Laryngomalacia

[ihearttc]

After some advice if possible!

DS2 is nearly 8 months and GP thinks he has got Laryngomalacia...well actually I told the GP thats what I thought was wrong and she agreed lol!

Bit of background-he was born at 32 weeks due to me having severe PE. Absolutely no problems after birth and went to NICU but didn't need oxygen-just tube feed for 3 weeks and then we came home. He's always been a noisy breather but DS1 was as well and he had tonsils/adenoids out at 2 years old as they were enormous and affecting his hearing/speech so I just assumed he was the same. He has always been hard to feed-would take nearly an hour to have 4 oz of milk but again exactly the same as DS1 so not too bothered. When we began on solids I noticed that he couldn't move the food about his mouth and literally everything was coming straight back out again so went to GP who said he had an undiagnosed tongue tie (it wasn't a classic tongue tie but the frenum was really tight so his tongue was in the same position constantly and couldn't really move) so referred us to hospital and they cut it for him without any anaesthetic. It was a bit traumatic on a 7 month old but am so glad they did it as it's made a huge huge difference.

However his breathing seems to have got worse over the last 4 weeks and I can tell the sound is coming from his throat rather than his nose if that makes sense. He had ear infection as well 2 weeks ago and emergency dr saw him and said he had croup (its that sort of noise he makes) and it would go as soon as the infection cleared up but it's not gone and in fact I think it sounds worse. After a bit of googling and looking on youtube (there are load of videos of what laryngomalacia sounds like) I went back to GP and said that his breathing was worse and could it be that. She agreed and has referred him back to the neo-natal consultant to see what they say.

Everything that Ive read suggests there is nothing they can do anyway and that in time he'll just grow out of it but it's awful hearing him like that and it's getting to the point where Im not wanting to take him places because literally all you can hear is his breathing and everyone keeps staring cause it sounds so awful.

Is it possible for laryngomalacia to come on at about 6/7 months or is it more likely that he's always had it but has now become more noticeable? It definitely wasn't as bad as that before he had the tongue tie cut because I would have mentioned it at the time so without this sounding really daft is it possible that by releasing his tongue tie the tongue/larynx can move around more therefore causing the laryngomalacia.

Its worse when he's sitting up rather than laying down and much worse when he's awake rather than asleep if that means anything.

Any help much appreciated!

hi there,

i would ask to see a paediatric ent to be on the safe side. My son had a double aortic arch (very rare birth defect where the aorta is malformed and squashed his trachea and oespoghegus), it manifested itself in worsening noisy breathing and then severe (ventilated) bronchiolitis at 4 months old. We were lucky, in retrospect, that he was diagnosed so quickly. I don't want to over worry you - his condition was very rare and he is well now, and laryngomalacia is much more common and will self resolve, but i think it is worth pushing to see an expert to get to the bottom of stuff. How does he cope with colds etc? I think I have read though that larngymalacia can sound worse before it gets better - as babies begin to move around more and breathe harder. DS was left with some tracheamalacia due to the compression hence my reading up... x

Thank you-nope it's fine you haven't worried me too much. I have to admit it's the fact that it appears to have come on so quickly which has concerned me as well. Because he was prem he has been examined so many times by different dr's and they didn't pick anything up which is why it's strange for it to almost suddenly appear now. Think I was almost expecting something to be wrong when he was born cause they warned me he'd need oxygen etc but he didn't need anything...thought we'd escaped relatively unscathed from the whole thing and then now this.

Crikey that must have been scary for you-did they diagnose at birth then or when he got the brochiolitis?

DS was fine with colds etc when he was really tiny and had just came out of hospital...I have a 6 year old as well so obviously he had lots of colds etc over winter but DS2 didn't get any of them but since April he has had one cold after another and repeated ear infections and then this awful noise which they originally said was croup.

I think GP is referring him back to the neo-natal team as we haven't got to go back until November and obviously I want this sorted before that but I know who the pead ent consultant is at the hospital because he did DS1 tonsils/adenoids so I can ask to be referred to him instead. I seem to have been blessed with 2 gorgeous boys both with nose/throat issues lol!

Many thanks once again-it's such a scary sound to have to listen to and literally nobody seems to know much about it.

hiya, my first baby had tracheamalacia and it was quite distressing (more so for us than for him though i think)

we were told it often gets worse around the time they are weaned, and that was true for us, tho i don't know why... so that could be why this has suddenly become obvious for you too?

in our case ds1 grew out of it himself, but we did need to have chest x-rays and spend a night in hospital for them to monitor his oxygen levels to make sure it wasn't affecting that... have you been referred to a paediatrician about it?

hi, if he copes with colds well i think that is a very good sign that whatever the problem is isn't too bad. I know that laryngomalacia can sound a lot worse than it is, sometimes (but also that kids who have it can be vulnerable to getting very ill with cold germs - depending on how badly they have it.) DS was diagnosed after he failed to recover from bronchiolitis as expected, and because of his history of noisy breathing. He needed a bronchoscopy for diagnosis and then a fairly major op to correct the DAA. But I think that laryngomalacia can be diagnosed fairly easily and non invasively with something called a flexiscope. Best of luck with it all, it sounds like he is doing really well on balance after the tricky start.

hiya-thank you for your reply. Yes I think it is more distressing for us than them...he is quite happy and completely oblivious to the awful noise he makes! GP has referred us back to his neo-natal consultant because he was premature...she thought it would be quicker to do it that way I think because he's already in the system but am going to see if I can get him seen by ent quicker. GP did suggest just turning up at A&E if I was at all worried but feel a bit daft doing that because he's fine in himself just making the noise.

It could be why it's only just now become more noticeable if it sometimes gets worse when they are weaned-he's nearly 8 months but more like a 6 month old in terms of weight and development. Its very loud when he's actually sitting completely upright and he's just started sitting on his own which means I hear it all the time!

yeah we were told to go to a&e too if it got very bad, which we did one evening.
his breathing was so ragged that they couldn't actually count his breaths because they were having trouble telling where each one started and finished

Aww thank you tholeon-he's an absolute little star and Im so lucky he's here. I think it's the constant worry of the noise thats the worst thing...it just never goes away.

That sounds quite positive then-will let you know how we get on. Many thanks once again.