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4 week old diagnosed with a floppy larynx, what do i need to know?

13 replies

nobodysfool · 30/01/2009 20:01

My ds was born 3 and a half weeks early by emergency c section and was taken into special care for a couple of days.
Since being home he developed an odd squeak and wheeze when having bottles and problems catching his breath.
He is a good weight of 8lb 8oz now.
Last night i took him to A&E on the advice of the maternity ward i stayed on and they diagnosed a floppy larynx.
We were told this was the reason for the noises and why he takes so long to feed.
We were also told he will grow out of this.
Is there anything else we should know and anything we can do to help?

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bodiddly · 30/01/2009 20:03

My ds had this as well .. we found that he was constantly rattly and phlegmy (still is a little to be honest and he is nearly 4). He was a very sicky baby which I think was attributed to the floppy larynx but he grew out of it by 12-18 month. We found that when I stopped bf a thicker formula helped a little ... as did weaning!

bodiddly · 30/01/2009 20:05

He was emergency c section as well! Apparently it is quite common for cs babies to be rattly and phlegmy compared to vbirths as the journey down the birth canal helps to rid them of the mucus! All a bit ewwww but probably relevant!

Chatkins · 30/01/2009 20:06

dd1 had this, my doctor picked up on it when she was making funny noises through her six week check.

She had to have a chest x-ray, and that was about it. I think in serious cases they can do a little operation on it. But hers sorted itself out before about 6 months, I think, though I'm not sure.

Remember it being scary at the time though, first child, making funny high pitched noises all the time ! Had totally forgotten about it until I just saw this thread title!

Elibean · 30/01/2009 20:14

There's a thread on laryngomalacia thats just been started, do come and post on it

dd2 has laryngomalacia, she's 2.2 now but was diagnosed at 4 weeks, when she was very ill with bronchiolitis and in hospital - and had the conclusive test (flexible laryngoscopy) at 8 weeks. They wanted to see the extent of it, which in her case was moderate - no need for surgery, but more risk of hospitalization with upper respiratory tract infections like croup or RSV.

One thing you should know is that the stridor (noisy breathing) tends to get worse up until about 3 months, then it slowly gets better. And its known to be stressful for parents - even though most of the time it doesn't cause distress to the babies who have it, so if you find yourself worrying about the noises, remember you are not alone! You'll get used to them, we did, to the point where we'd forget and be surprised when GPs who didn't know her would do a double-take when we walked into their room with her

We always put her to sleep on her side (wedged, early on) as sleeping on their back is the worst position as the larynx 'flops' backwards. We raised the head of her cot on books, or put a pillow under the top end of the mattress. We bought a humidifier, which helped especially when she had colds or coughs.

Many babies grow out of it by 6-9 months, dd didn't but it got slowly better - till her huge tonsils and adenoids added to the narrow airway caused by her larynx and resulted in horrible sleep apnoea, which has been sorted out by taking her tonsils and adenoids out and (to quote the surgeon) 'while we're in there, we may as well do the larynx surgery because its still quite floppy' which meant cutting teeny bands of cartilage either side of her windpipe.

She's now doing absolutely great!

Feed-wise, we had no problems...though weaning took a while, because she couldn't cope with pureed foods at all: BLW with finger foods only worked beautifully though.

Elibean · 30/01/2009 20:16

Ooops, nearly forgot most important bit: 80% of babies with laryngomalacia also have reflux. So if they haven't discussed this with you, or given you meds, or told you to look out for it - DO look out for it. If he starts throwing up a lot of feeds, or seems in pain after them, I'd go straight to the GP and ask for Ranitidine and maybe Domperidone (they may not give them, but if they won't you can ask for a referral to ENT paeds urgently).

Untreated reflux can make breathing issues worse, temporarily, so really worth treating - apart from it obviously being kinder on both of you!

HTH

nappyaddict · 30/01/2009 20:18

DS had it and they said they wouldn't do anything until he was 3 cos most babies grow out of it. He still has it a tiny bit at 2.7 but nothing major.

Mimsy2000 · 30/01/2009 20:21

had something like this as well. son grew out of it around 2 years. it's a drag and very stressful but ultimately seems to go away. things like raising the head end of the cot, having him sleep on his side rather than back when he gets a bit older help. as he got older, larynx issue wasn't really a big deal. he was what gps referred to as, a 'happy wheezer' meaning he made noises when breathing but it didn't seem to bother him much. the only time it became an issue was when he got ill. he had several bouts of croup. normally not a big deal but with his larynx he really struggled to breathe. it always happened at night. if your little one gets a cold, bear in mind the larynx issue makes it all the worse. and if you have any worries whatsoever march down to A&E - don't ever feel like you are overreacting.

hope that doesn't scare you - like i said it does seem to go away around 2 years.

also, my ds was a normal v birth; arriving 2 weeks early.

also, don't let healthcare professionals fob off the problems as 'asthma' b/c if his problem really is a mechanical issue the asthma meds prob won't be of much use.

sorry i'm a bit stream of consciousness. it's friday. feel free to pm and i can give more info.

all the best

nobodysfool · 30/01/2009 20:29

Thanks for all your speedy replies.
The noise comes and goes but mainly when he is feeding or sleeping.
So far-touch wood-he has only had a minor bit of reflux and it doesn't seem to be bothering him too much.
They didn't mention anything about an operation in fact they seemed quite unconcerned about it all.
Will look into the wedge idea and will keep an eye on the reflux situation.
Thank you.

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Breizhette · 30/01/2009 20:32

DS has it too and I have just started weaning but he's not interested at all. I was told it would last up to a year. Had a c/s too.

nobodysfool · 30/01/2009 21:20

Elibean-could i have link to the existing thread please, struggling with this new layout.

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Elibean · 30/01/2009 22:51

Would gladly provide link, but am hopeless at them - they never work

Will bump thread to top for you, it has 'laryngomalacia' in the title, should be easy to spot....new layout baffling me, too, and I can't get it to go back to old layout no matter how often I click on 'classic'

daddynet · 30/01/2009 23:12

nobodysfool - hi there this is our EXACT situation.

Our 8 day old had this, we are slightly large wheeze, to cut a long story short he was taken to GOSH for a MLB (Lanyoscope, a small camera down his throat) and at the same time they decided to cut 2 small pieces away from his traciher (forgive the spelling mistakes).

The link to the post is - www.mumsnet.com/Talk/childrens_health/695108-Information-on-living-with-laryngomalicia-Tips-A dvice-and-experenice

We were and still are very concerned with him, so please feel free to ask any questions that you want.

From the operation his noise has stopped but we were also told that he should grow out of this within 18 - 24 months.

We are now starting to plan things like angle of bed, air humidifers etc....

Some babies i believe can live with it and once the throat developers with the baby they will grow out of it.

What have they said they will do.

thanks

nobodysfool · 01/02/2009 22:16

Thank you Daddynet.Found the thread you started.

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