Larynmoglacia

[Sublime567]

Hi there,
My 7 month old daughter was rushed into hospital when she was 6 weeks old, she was choking and unable to breathe, a deep purple and stiff. The hospital straight away said it was reflux ( which she was finally diagnosed with 2 days prior) at the time I wasn't told reflux could be this bad. As months have gone on she randomly stops breathing and is desperately gasps for air. Some days it's not so bad as others. I've spent many minutes, hours, days and weeks fighting for her to be referred to an ENT specialist. I finally got my way and it was confirmed that she had larynmaglacia. I had done previous research on this and although she ticks some boxes, she doesn't have the high pitched breathing sound that is so common.

As she has been so purple and becoming distressed when having this episodes of "choking" the ENT consultant has just preformed an operation by removing some skin from around her vocal cords. We were told that it would 100% solve all if this. It's now been 3 days since this op and she is still having episodes of being unable to breathe. Has anyone or know anybody that has had larynmaglacia like this, or possible have any ideas what it could actually be?

There is a Facebook group of mum's based in America whose babies have laryngomalacia- try looking on Facebook and asking them for advice

Hi, DS(4) has laryngotrachaeomalacia.

Have they considered trachea as well as laryngomalacia? That will lead to breathing difficulties. Trachaeomalacia means the trachea is floppy as well as the larynx. Some babies have both issues. DS had larygomalacia diagnosed in a bronchoscopy and annoyingly it was a different consultant doing the surgery to the one who knew DS's symptoms really well. The surgeon assumed the larynx accounted for all symptoms so didn't fully investigate further. DS' consultant wanted to go back in to check the trachea.

Have they checked for other issues as well? With a likely diagnosis of laryngomalacia and trachaelmalacia DS was checked for Primary Ciliary Dyskinesia, every form of Cystic Fibrosis and a few more diseases I can't even recall. His symptoms got a lot worse with infections and he got a lot of infections. He turned out to have okish cilia, so they weren't working brilliantly, but just within normal. His immune system was also tested, and was at the low end of normal. Also had tiny nasal passages, allergies and asthmas, so his symptoms were a sort of perfect storm of laryngotrachaelmalacia + various other milder issues.

Could swelling from the procedure be an issue?

Did they do a lung wash to see what bacteria were lurking down there? We had a few, including a multi-resistant pathogen.

We had a difficult few years, but at age 4 DS is doing a lot better, though we still hold emergency ABs for him and have to nurse him through colds and flu. The cartilage stiffens over time, and by 1.5 yrs there was already a significant improvement.

That's all I can think of, and the suggestions above may not fit with how your baby is presenting, so the consultants may already have discounted them.

Who is your consultant? We had an incredible consultant in paediatric respiratory, at the regions respiratory specialist unit.

Thank you so much for getting back to me guys!
I've tried joining the fb group, I'm still waiting to be accepted 😧
We've had nothing else suggested to us as what else it could be! No tests have been carried out! And she has never had any infections or periods of being unwell.
My daughter has such terrifying episodes of being unable to breathe, but each time im told " it's reflux" "babies don't just die" "brush up on your first aid skills" to be honest I'm loosing all faith in these specialists, and I'm just desperate to find out what it could be, I'll have a good look at what you've suggested. I did take into consideration post op swelling, but it's been carrying on nearly 7 days now. And she eats and drinks just fine.
Shes currently under Manchester children's hospital, which to be honest (and without boring you) I'm really not impressed so far.
She now has to go back in 2 weeks time due to continues choking. I'm just dreading I have to wait ANOTHER 6months to be referred to another department.
Sorry for going on, but I do think I'm loosing my mind 😬

I think most of DS's investigations were because his main problem was him going into respiratory distress with every cold. He did have reflux too, but that wasn't so much of an issue, it just fitted into the general floppy passages picture.

I suspect that many of my suggestions won't therefore be relevant unfortunately.

You may feel better if the doctors can talk you through what to do in an emergency, such as recus, choking.