Laryngomalacia- Floppy Larynx

[EssJayyCee]

Has anyone got any experience with this?
If so, I have a few questions:

-How you got it diagnosed?
-How old your baby was when they were diagnosed?
-What treatments there are for it?

Any other useful information.

Thank you x

Yes!
My baby is 22 weeks (18 weeks corrected).
She was born 5 weeks early and spent 8 days in special care. Whilst there she made no noises.
The day we got her home she started making noises and we had a high panic and rushed back to a&e thinking she couldn't breathe. That is when they first mentioned it was probably a floppy larynx. She makes a noise with almost every breath. We were referred to st George'S hospital where she saw an ENT consultant who used a camera up her nose and down her throat to confirm.

We have had a sleep study as we were very worked she had sleep apnoea as she had very long pauses in her breath but that showed normal oxygen all night. She has suffered bat with silent reflux (the two go hand in hand) and has been on omeprozole since 3weeks old.

We have had one other occasion when she went to a&e again with rapid breathing but all was fine.

We have been told that she just needs to get stronger and it will strengthen and resolve itself. Over the last few weeks she has started rolling and we actually just commented today about how it seems to be getting better.

The main concern we have is growth. It was explained to me that she uses more energy to breathe because of it and therefore her growth has been very slow. She is weighed every two weeks to keep an eye.

It was very scary at the bath beginning and I was very scared at first but actually it has been fine and she is healthy and happy.

Is there anything else you would like to know? Or I have missed?

Ds was diagnosed by a paediatrician at the hospital when he was about 10 weeks old. I knew something was wrong as he kept making what I call a 'gorilla noise' when he was on his back and seemed to only feed well if he was sat bolt upright. He constantly sounded like he was struggling to breathe at night and I took him to the gp a couple of times but she kept claiming it was normal until I went in armed with videos and cried in her office.. The hospital Dr she referred us to recognised it instantly from the sound he made and showed me how the noise was made on the intake of breath rather than the out breath so it was not wheezing from his lungs but was his vocal chords. His was a relatively mild case which he grew out of in a few months as the cartilage strengthend up naturally. He's 17 months tomorrow and he is absolutely perfect, it's had no effect on his speech or eating or anything. In fact he never shuts up now 😁. As for treatments I don't really think there are any, but I may be wrong in severe cases. Otherwise its just something they grow out of!

So glad you started this thread OP- I self diagnosed my LO (4months old) after begging hospital staff and the gp to refer me to paediatrics- trying to convince them I wasn’t a paranoid 1st time mum (she’s my second), that she cannot sleep on her back and that my concerns were real and that it was more than reflux. I googled, sent videos to drs and eventually am being referred by a paediatrics dr that agrees with me.
My baby has continually grown and as I understand it will grow out of it. I’m awaiting to see a consultant at the children’s hospital, I understand they can put a camera in her throat to confirm it.

My question to those who were officially diagnosed - was weaning “normal” and “traditional” with blw or spoon fed- I’m petrified than come weaning time the food could go down the wrong hole.

Oh and to add I’ve read in severe cases they can snipe part of the throat- otherwise they grow out of it

@OnlyFoolsnMothers ds weaning was completely normal. We both spoon fed and gave him finger foods and he has had no trouble swallowing whatsoever - great gag reflex! I think by 6 months he had completely grown out of it or if he hadn't it was hardly noticable.

[quote MrFlibblesEyes]@OnlyFoolsnMothers ds weaning was completely normal. We both spoon fed and gave him finger foods and he has had no trouble swallowing whatsoever - great gag reflex! I think by 6 months he had completely grown out of it or if he hadn't it was hardly noticable.[/quote]
Thank you this helps ease my mind

When my son was born he was stressed and not breathing, but thankfully he was resuscitated and moved to neonatal for a few days - it was here that I noticed he had strange breathing and when nurses were winding him it was like he was choking/couldn’t breath. I even still have videos of it and I hate to watch it as he just looks so uncomfortable.

I remember thinking shit what’s going on, they didn’t seem too worried but as a new (first time) mum I was scared shitless. I found a doctor and asked them if he was ok? Did I need to worry? He would be discharged soon and I had no idea how to deal with this in the outside world without the close help of neonatal. Doctor said it was laryngomalacia and to keep an eye on it if it got worse when he was home.

I mean this did keep me on edge a bit. Winding him initially, it was honestly like he couldn’t get stuff up and in hindsight I reckon the flap was just closing when it needed to be open etc and causing him problems.

The breathing noise went but we did have really bad reflux for about 8 months. I’m talking sick up to 30 times a day, it became normal to soak through every Muslin and bib that we owned in a matter of hours and we had mountains of the things. We’d go for days out packed to the brim with clothes muslins bibs wipes, and just use them all that’s how severe it was. We realised that this was probably a part of his laryngo so just dealt with it as otherwise he was fine. Just a puke machine. It was tough going.

He’s now 1 year old and grown out of it with no signs of still having it. He eats like a champ, absolutely no problems with weaning he will eat anything and swallows ok. In fact swallows withiut thinking about chewing much 🤦🏻‍♀️ 😂 but that’s another story.

It was scary to begin with and sometimes felt relentless and like it wouldn’t end but we got there. Hope you are doing ok!

Hi there, a newly diagnosed 2 week old baby here with laryngomalacia. We came out of hospital yesterday and I'm still a bit overwhelmed and anxiety is at an all time high what with her frequent episodes of catching her breath and extra noisy breathing! Just wondered how you are all getting on and any advice/reassurance? Thanks 😊

I can remember being where you are so clearly. I felt like I was on edge whole time and your hormones are still all k we the place!

My reassurance to you is that from all the tests and the sleep study we had - she has never actually had any issues with breathing or blue spells so the sound is MUCH worse than the realty. As your baby grows you will start to get used to the noises and sometimes even find them reassuring. I like that when I check on my baby when she is in her cot I can head her through the door as I am approaching 😂

If you have any questions then just ask and I'll try and help if I can.

7 months on and I am much calmer now. A breathing monitor really helped my anxiety.

Weaning with a floppy larynx is our current stress!!

Also check out the Laryngomalacia UK Facebook group for lots of support and advice

My daughter was diagnosed by a paediatrician at 12 weeks when we were referred for reflux medication. She grew out of it and it had no significant impact as far as I remember.