Any parents of a child with laryngomalacia?

[Ayekat9]

Hi,
My little girl was diagnosed with laryngomalacia (floppy larynx) at about 3 weeks old. She was born 3.960kg, she's 8 weeks today and weighs 4.360kg.
She was breastfed and we assumed she needed supplementary formula, but now she is only formula fed. She was losing weight when she was breastfed.
She doesn't want to drink bottles either and sleeps all day. If she's awake she's crying and she squirms around when she does finally have a bottle. She still manages around 20oz a day which isn't much below what she's meant to have.
She seems so uncomfortable all day long, she seems to have silent reflux too, which can be related but she never actually spits up.

Does anyone else have this where their baby isn't gaining weight quick enough? What worked for you?
Health visitors are telling me not to worry but I've had 2 other kids who were in the 95th percentile. She's just under the 25th now and it keeps dropping.

She is waiting for a referral to ENT but I'm sure this will take months before there is anything done.

No but I just wanted to bump for you

Thank you @CadyEastman
There isn't much UK information on laryngomalacia online and although websites say it affects feeding, there isn't much info on that too.

It's a shame they there's more information out there. Have you tried looking in the MN archives? Might be something in there?

My son had it as a baby, he was a very noisy breather and the stridor during his bottles made people stare in public. He also had reflux. He grew out of the laryngomalacia by about 4 months although he is still a snorer and has occasional reflux even at 5

Good evening. My son was diagnosed with floppy larynx. Didn't dissappear like they said it would. I felt something more was wrong and asked continuously for help off so many different professionals. He had a constant rattle chest with his breathing affecting his throat, like you could see he was sucking in hard to breathe....

When he was 11 months old he went blue. I phoned an ambulance and refused to leave the hospital because I wasn't satisfied that a floppy larynx could be the whole reason this was happening....

We then got transfered to birmingham Children's Hospital because they have the best ENT (ear nose and throat) specialists in the country...

Low and behold my gut was right it was more. My son had pappilomatis on his larynx and voice box essentially restricting his breathing and posing a risk to his life.

Surgery was preformed. 11 years later he had surgery every 28 days up until he was 7 years old and he then got approved for a new trial of treatment called Avastin. And that is now every 3 months.

Not saying your child has what my child has but keep it in mind if it persists past 11 months old. I would say it wouldn't be normal to of not grown out of floppy larynx. I'm not a medic just my opinion from a mum who has been through a journey that started like yours. X

You are an amazing mum. How is your son doing now?

Fortunately he's never known any different so he takes all of it in his stride. He has medical trauma and his voice box is significantly scared from all of the surgery. That means he can't talk like a "regular" person nor no where near as loud.
I do feel so sad for him but at the same time I'm just very greatful for him.
Thank you for your kind words ☺️ Last week we celebrated his 12th birthday and Just yesterday he was in waterfall house hospital in Birmingham, (behind the main children's hospital". He had his Avastin infusion which is done every 3 months now, essentially finlay is being trialled on this to see if it helps his immune system fight back. Unfortunately it still is growing but at a much slower rate, he was having surgery every 28 days before this and his quality of life was so poor. Bless him.
I remain hopeful that one day he can be free from it but if not I'm sure he will not let him keep him from how ever he dreams of living life ☺️

I'm sorry if I took over the original post. Not intentional. But I'm happy to bring awareness. Although it's rare it's important to note x

Thank you for commenting.
I really appreciate everything you have said and I'm so so sorry to hear about your son, but glad to hear he's receiving the treatment he needs. Thanks to you, you kept pushing and made sure he got the diagnosis.
I hope he becomes free of it.
My daughter is now 11 months and apart from noisy breathing, thankfully she's doing a lot better. She had the camera down her nose and they confirmed a moderate case of laryngomalacia. She was put on special milk to help her gain weight, at one point she dropped to the 9th centile, but she wouldn't tolerate the taste and it was very thin so just made her reflux worse. I decided to get her SMA comfort and she was a different baby overnight. She's now in the 75th centile. She still has reflux but at least she gained weight.
It's just disappointing since we were doing so well breastfeeding and I felt pressured to give it up to help her weight when that wasn't the issue.

Wow, surgery every month is insane! He sounds like a wonderful and strong young man.

Hoping for all the best things for him and your family. And good luck to you OP @Ayekat9 I'm glad to hear your daughter is doing better x

Hi just wondering if anyone else's baby has been constantly ill with their laryngomalacia. My boy has been on off ill since January, not just breathing or chest related, but high temps, rashes etc. Are they more susceptible to illness.