Laryngomalacia - breathing problems?

[QueenOfThePumpkins]

Does anyone here have experience with laryngomalacia (floppy larynx)? I am incredibly worried about my 8 week old baby. She has had very noisy breathing since she was about 2 weeks old, and more recently appears to struggle with her breathing. 2 GPs have seen her but said it was "normal", and in the end we took her to A&E. She was seen by another two doctors there who reached the conclusion that she has laryngomalacia. I've read up on it and it does sound likely, apart from the fact that she feeds absolutely fine. Her breathing is actually at its best whilst she is feeding
None of the doctors seemed very concerned about her breathing, even though she has chest retractions most of the time (which they saw) and sometimes appears completely unable to inhale for a few seconds . You can see her trying a few times before successfully taking a breath.

Can breathing really be this bad with laryngomalacia? The only positive is that she never appears cyanosed and keeps a good colour. I just wish they'd have actually checked rather than saying they "think" it's that. I know they are stretched, but what if it's actually a heart condition or asthma? I've tried getting a private paediatrician but none will see her, only offer a phone appointment. I am just so anxious that she will completely stop breathing, to the extent where I am not sleeping myself as I stay awake watching her
DH thinks I am being overly paranoid as she has been seen by a total of four doctors
But she is my precious baby and it breaks my heart to see her struggling

It can cause breathing issues yes though it is common with small babies to sound quite noisy at times when breathing anyway. My child has sleep apnea due to it and uses a bipap vent at night to keep his airways open. But he has severe needs so he is an extreme case.
Could you see if you could get hold of a sats monitor. If you can get one that does continuous monitoring and alarms if levels drop it would enable you to sleep at night without worrying so much. Our child never sleeps without one on.
Otherwise get one of the finger monitors and check sats levels during periods you feel your baby is struggling . If oxygen levels are stable then it is a good sign that it is not causing any issues. Pulmolink are a good starting point to source a monitor x

Is there a specific condition you have in mind, or a test that you are wishing she had had? It's quite common to reach diagnoses in young children from the history and examination rather from additional investigations. The most important investigation is time and seeing how things evolve.

Asthma as it's usually understood isn't encountered in children this young if that's any reassurance.

@Queenofthepumpkins do pm me for more details my laryngomalacia baby is 1 now - but in the early days, it is important the hospital rule out any thing like a hole in the heart, hole in the pipe work anything else that has similar symptoms, like a vascular ring etc -

Mr Albert at the Portland ended up diagnosing as NHS referral got lost/took too long & we had a shocker with someone presuming, everyone had done more serious checks & like you kept looking at a baby working too hard to breath & pulling in - all red flags on normal babies -

So we wanted some basic checks completed (which A&E staff did think had happened) but once you have had a chest x-ray and echo of heart you can try and accept the diagnosis- we went private and Mr Albert put a thin camera down - took seconds and no sedation needed.

The breathing thing takes a while to get used to - to be honest you have to stop looking, I would keep a vest on and was told to get used to new normal - but things to look out for in these babies reflux is usually worse & keep an eye on other things like you talk about in your first post until other things ruled out.

Keep an eye on the weight gain, but never an issue for us - my babies lungs do have changes due to reflux/swallow issues possibly connected -

In this climate all of the above may not be possible as going back to A&E right now would not be advisable - if you are london/south based try Mr Albert even on video call he is an expert who may be able to reassure you.

Video post feeding, as although feeds fine, you want to check when digesting they are not working too hard.

Lots of cuddles, keep upright after feeds for at least 30 mins & in this climate & if money not a problem they do monitors that monitor oxygen via a sock type thing.

Thanks so much for the replies. @flapjackfairy I didn't know you could get monitors for home use - I will drop that company an email thank you.

@lesugrist, as trampolinebouncer says they can use a camera to easily confirm the laryngomalacia diagnosis and that would then rule out anything more serious. I wish there was some way of getting this done, but at the moment it doesn't seem possible
I just don't want anything going untreated, like a heart condition. My little girl is an identical twin and heart conditions are common for them, but none of the doctors have been interested.

@trampolinebouncer thanks so much for sharing your experience, I hope your little one is getting on ok now. I will have a google of Mr Albert - we aren't in the SE but I would try a phone appointment or anything just now.

I am feeling a bit frustrated as DH still thinks I'm being obsessive, and I'm sure it would be taken more seriously by the GP/hospital if not for everything going on just now

DS is 5 weeks old now and we’ve had a Largngomalacia diagnosis after a trip to A&E. @QueenOfThePumpkins I feel exactly the same about the diagnosis - I’m so worried that they’ve given it to us without any further exploration of the problem. It was very quick and quite flippant. The doctor just said - oh it’s very common, he’ll likely grow out of it, here’s some gaviscon. They also referred us to ENT but we’ve been told there are no ENT clinics because of coronavirus at the minute. We’ve found a paediatric ENT and are going private - send me a message if you’d like to have the details.
@trampolinebouncer everything you’ve said it reassuring, thank you! I’m sure it’s a mild thing that we shouldn’t we worrying so much about, but I think everything is exacerbated by the current situation .
Anyone else with reassuring Laryngomalacia experiences would be much appreciated!!!

My eldest (now 15) had laryngomalacia. He had extremely noisy breathing and sounded like a baby Darth Vader when relaxed and a donkey on speed when excited. It was very startling and we were so worried that even when the pead told us he was fine, we got a private consultation to double check. He was indeed fine.

Having said that, it made it hard to go out because it used to worry strangers too. I got kicked out of post natal yoga because he was disturbing everyone and when he was about five months old I was in Mothercare and he saw another baby and got really excited. His breathing was so noisy this poor woman wouldn't believe me that he was ok and phoned 999. I then had to spend ten minutes convincing the operator not to send an ambulance and that he wasnt in fact dying, just happy to make a friend. Those moments you wish the ground would swallow you up.

It was at its worst between 4 and 8 months and was mostly gone by a year.

I don't think it is wrong to get a second opinion if you're really worried (we did) but the likelihood is it is a benign condition.