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Experiences with ENT issues- laryngomalacia/adenoids

4 replies

TolkienLover · 20/06/2023 12:04

Hi all. I'll try to be concise. I have a 7 month old baby who has always refused the bottle but has been an absolute nightmare to feed since day 1. When she was born, she was extremely sleepy, had to work hard to breathe and struggled to feed, and we were kept in hospital for a week while we tried to get to the bottom of all this. Around day 5/6 a consultant confirmed that she had laryngomalacia but reassured me that this would improve in time, as would her feeding.

Well.....7 months on, it's the worst it's ever been. She feeds for seconds or if I'm lucky minutes at a time about 4720 times a day- it's like she wants to feed but the sucking causes her some pain or discomfort. Honestly it's like I've been cluster feeding a newborn for the last 7 months (and I have a toddler at home too!). I've been to the GP countless times about an ENT referral as the initial one clearly got lost but as my baby is gaining weight, they are telling me she doesn't need referral. I think they think I'm being dramatic when I say all I do is feed her ALL DAY to make sure she gains this weight.

Her other symptoms are that she sounds like she has lots of mucus at the back of her throat, she has a constant cold and snotty nose, sleep is horrendous especially in the daytime- I drive us around from place to place all day most days just so she will sleep and not be on my boobs for a few hours. She also sweats a lot especially when falling asleep but I don't know if this is normal for some babies? She rubs and pokes her ears all day- the GP checked and said there's lots of wax and to try olive oil drops. But baby doesn't stay still long enough for these to go all the way in her ear canal. She's also tired ALL THE TIME which worries me. No amount of napping or sleep is enough for her probably because the quality is crap. She's always cranky and rubbing her eyes ready to nap again but then struggles to actually settle.

Has anyone been through similar? I'm at a loss. I've googled and feel it might be enlarged adenoids or tonsils? Would really appreciate people's experiences.

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Are your children’s vaccines up to date?
Heath2330 · 20/06/2023 12:20

Hey my son is nearly 10 weeks and has suspected laryngomylacia and a minor tongue tie he lost weight initially but Is now gaining again his symptoms sound a little different to your LO he does this squeak and gasp and squeaks when taking a bottle or crying and has terrible reflux we have been referred but the waiting list to be seen by children's ENT is 10 months he does feed ok bar the squeak and reflux but is bottle fed and takes 4oz every time it's sounds like your LO is getting what she needs but it's taking a massive toll on both of you has she been assessed for tongue tie? Also I'm not sure if your position but may be worth considering private assessment and they will then write to your Gp with reccomendations

TolkienLover · 20/06/2023 16:13

She's been assessed for tongue tie and seems ok in that regard- my eldest had a tongue tie so I know how it feels to BF with that and I've been absolutely fine this time around.

Yes I think private may be the only option unfortunately.

OP posts:
Hazzyyy · 15/01/2024 13:00

Hi @TolkienLover

My son also has Laryngmalacia and sounds exactly like yours but he doesn't feed! He's gaining weight super slow and dropping centiles.

I was wondering how you and your little one are doing? Any luck with getting anywhere where?

I'm so stressed!

LadyJ1986 · 21/01/2024 17:27

This is really heartbreaking to read.
My 6 week old is happily gaining weight...at the 6 week GP check I mentioned she seems to have reflux, stops breathing for a moment on feeds and has a big squeek feeding. I'd never even heard of laryngomalacia.
He immediately referred her and I got a letter saying I'd get contacted in the next few months for an appointment...we are in Bristol.
I don't get why you, with all your issues wouldn't be referred????

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