Tracheal tug? Neck moves when breathing?

[Cmccc]

Hi everyone, I am currently awaiting a referral to a Paediatrician for the symptoms listed below but we may be waiting a while due to Covid-19 restrictions and was just wondering if anyone had experienced this with their baby.

My daughter is 25weeks old and when she inhales and exhales her throat/neck, above her collarbone, “moves” in and out with every breath vigorously. It is particular evident when she is on her tummy. She has always been a “sniffly/snuffly” breather since she was born, there have been no episodes of cyanosis (going blue) that we have witnessed but she often has a fast breathing rate or breathes as if she has exerted herself or is excited.

Has anyone experienced this? No research I have found mentions “movement” in the neck during breathing. Common themes that I am finding are possible respiratory distress (the symptoms of which I am aware of and would act upon if needed), Laryngomalacia or Tracheomalacia - does anyone have any advice or experience of this?

My son has severe laryngomalacia. He was diagnosed around 4 months old. It's basically a floppy larynx or extra skin in the throat.

Certainly a tracheal tug on the in -breath is a symptom - it shows they are working harder to breathe. We took our son to our ped consultant (he was premature so we were still under the care of the hospital) around 3 months old as his breathing was incredibly noisy, every in-breath (except for when sleeping) was accompanied with a gasping sound. The consultant knew right away something was wrong just from how he sounded. We'd actually mentioned it to the doctor when our son was around 8 weeks old but we were just dismissed.

Our son struggled to feed, which is common, as babies with laryngomalacia struggle to coordinate feeding and breathing at the same time. Our son would stop frequently to gasp for air. A feed could take an hour. A lot of babies with laryngomalacia fail to thrive (but we were lucky on that front). His stridor sounds worse on exertion too. We had strangers comment on it - they thought he couldn't breathe or had a bad chest infection.

We were referred to a ped ENT consultant, who put a camera down his throat and confirmed his diagnosis and the severity of the case. Most babies grow out of it by 18 months or so but a few need an operation to help. Our son had an operation at 6 months - tbh, we don't think it particularly helped. He's 17 months now and still has a noisy stridor, particularly when excited, jumping around, tired or has a cold.

You really need to see your GP urgently if your child is having blue spells and has a tug. Our son had a few blue spells but not too many recently thankfully.

Yes I’ve seen exactly this in a baby diagnosed with ‘floppy windpipe’. It’s a classic symptom. She grew out of it before a year old.

Sorry, I've just seen that your post said no blue spells which is great!

@ThinksALot Thank you for your response! I’ve felt quite alone in our little journey so far, as no one I’ve spoken to has heard of Laryngomalcia or understands the stress such symptoms can cause. It’s reassuring to know that I’m not just an “anxious mother” as I’ve been described haha. I’m so glad to hear your little boy is definitely on his way to overcoming his floppy airway, is he doing a lot better now in spite of the existing stridor?
Can I ask what it was that determines he has Severe Laryngomalacia? How did he cope with the procedures of diagnosis and the operation to repair/support his larynx?

We first noticed it when my daughter was diagnosed with Bronchiolitis in Urgent Care after an episode of loud stridor and coughing one evening. The Dr saw her moving neck symptom but dismissed it as increase in effort due to breathing with mucus on her chest, which I can understand. I was then dismissed a further two times on separate occasions, them explaining it was “normal baby breathing” - I’ve found our journey so far really frustrating on that front...

We have been very lucky too that my daughter didn’t fail to thrive also! She couldn’t sustain breastfeeding at all without crying after latching, so we’ve been so lucky she could feed from a bottle much more easily. Did Laryngomalacia affect weaning at all? We’re holding off weaning until we have seen the Paediatric team after speaking with our health visitor.

Since this post I have asked our GP to request an appointment more urgently to ensure she is seen ASAP - fingers crossed she gets seen soon!

@MustWe thank you for your reply! I thought all along that this was a probable diagnosis with her symptoms. Thank you for the reassurance, hopefully she grows out of it and is none the wiser

@Cmccc how's your little one now? My boy has constant blocked nose and tracheal tug too. The doctors can't seem to help.

How's your little one now. My little girl has constant tracheal tug but her oxygen is OK and no one seems to be concerned. Its worse when upset or excited and she has nasal congestion it's been going on for 8 weeks now. Is you little one better or did you get a diagnosis x

@Cmccc sorry forgot to tag you in the above x

Hi @Clo02clo, just wondered what happened with your little one? I have an almost 7 week old with tracheal tug, he had bronchiolitis last week and has recovered now, but the tug is lingering, he's well sats fine even with bronch at the hospital, and been seen by GP this week for 6 week check. He's not a noisy breather at all, snores on and off but not anything to concern me.

Have booked a GP appointment for early December, which gives him a chance to completely clear the bronch and if it goes then will cancel but I have a feeling it's been there since birth but he's so well it hasn't concerned me!

Thanks x

@TwinMum18x hi she's almost 9 months old now and still has it but not as bad, some days are worse than others I've seen loads of Dr's and we've had alsorts of fob offs. One even said she over weight and panting like a dog to breathe !!! I then paid private and within 2 minutes he diagnosed her with LM (I can't spell it lol) it's basically a floppy Airways and she shpuld grow out of it by the time she's 2. Like your little one she isn't a noisy breather and that's her only synptom. She got diagnosed with silent reflux so that was the cause for the congestion and when it flared the acid would swell her nasal passage onto of the floppy Airways was why she was struggling abit. I'd have them check for LM. Hopefully my little girl will grow out of it soon I do feel it's better than it was. I to believe she had this from birth but when there newborn its hard to see there neck now she holds her head and looks around it's more obvious xx

@Clo02clo thank you so much for getting back to me, it's really appreciated!

I will keep that appointment for December and ask then. I'm actually a paediatric nurse and have come across LM lots of times, but they've always been very noisy. Like yours my little man isn't, and I know he isn't uncomfortable and feeds really well. He does sick up a bit but usually if laid down quite soon after feeds, his weight is great and has gained really well. He's also very happy when awake but can sometimes make the odd high pitched bird like sound.

You know when you just have a gut feeling that there's something but not an urgent worry! I will ask for an ENT referral and see what they say.

I'm glad your little one is improving and doing well. Thank you again.

X

@Clo02clo @TwinMum18x
Hi both, I know this thread was a while ago but just commenting on the off chance either of you see this!
My son is 6 months old and exactly as you both described, constant neck tugging and mild spit up after feeds however no other symptoms and no signs of respiratory distress. I took him to the doctors and she was not concerned, however she called the hospital and they have advised he comes in as an outpatient just to be reviewed on the side of caution.
I was just wondering if either of you got any answers for your little ones? And if the neck tugging disappeared in time?
thanks so much in advance if you see this x

@amiemama hi 👋 my little girl is 2 this weekend and reading this back I remember the panic. For us we never really got much help. She did/does have LM a floppy airway I was told she should of grown out of it by 2. Well we're at 2 and I wouldn't say it's gone but has reduced. I've ask and ask and seen so many drs and they say maybe this is her normal as long as she's happy and gaining weight and not dipping in at the Ribs and mottled skin she is probably doing just fine. So 2 years later we're still sort of with it but it doesn't give me as much anxiety as before. Some days are worse than others but there not as frequent xx

Hey @amiemama Gosh I remember now how worried I was.

My little one was seen at the hospital (I work there and took him to be seen by my team). They agreed he probably had a mild laryngomalaecia, but weren't concerned enough about him to refer to ENT.

He is 18 months now and has improved massively, I can every now and again usually when unwell hear a bit of a stridor but otherwise he's grown out of it.

Sending lots of love xx