Laryngomalacia

[angelpops]

Hi there,

Does anyone else's child have Laryngomalacia? Not many people have this condition so can't really talk about it with anyone.

[tholeon]

hi there, I do know a bit about it, though my DS has/had tracheamalacia, which is slightly different, but similar. His was caused by a vascular ring - a rare form of birth defect. He was very ill at one point, in intensive care, but is now nearly 21 months and (touch wood..) extremely well. How old is your DC? How have they diagnosed this? Some of the most important things to know is that the severity of the condition varies greatly, babies who have it normally outgrow it by 2ish, but while they have it they can be more vulnerable than most to respiratory viruses. There are a couple of on line support groups but most of the posters there have children with very severe forms of the condition, so they might worry you needlessly.

[jalopy]

My ds had this at birth.

Very noisy feeder and sleeper. Eventually his problem resolved naturally when he was about 4 months old or so.

Now a healthy 14yr old boy.

[Elibean]

dd2 has it. She's 4 now, and its not a problem - but she did have some problems as a baby, and again as a toddler, in so far as the laryngomalacia combined with RSV bronchiolitis (at 4 weeks) and with super large tonsils and adenoids (18 - 24 months) to cause problems.

She had her tonsils and adenoids out at 25 months, and the surgeon asked my permission to snip a fold in her larynx at the same time - the laryngomalacia was worse than they'd thought - which I gave. She has had no problems since, though she's still a noisy sleeper at times!

How old is your little one? There are soo many degrees of this!

[Elibean]

ps I do understand the feeling isolated with it - its not an illness, its sometimes hard to know how much its going to affect your child or not, and generally ends up being worrying without being very clear. Happy to chat about it anytime.

[highlystrung]

Hi there. My DD 15 months had laryngomalacia last year - she seems to have outgrown it now. We noticed her doing noisy breathing and our GP sent us to the local children's hospital, who said she was a 'happy wheezer'. Well I wasn't very happy with that diagnosis because she only made the noise on inspiration, not like you do with a wheeze. I took her back and another paediatrician instantly said she had laryngomalacia (which is what I'd thought from looking online). She had a little camera put down her throat which confirmed it. She's outgrown it now and to be honest it never caused her any problems. Was just another thing she had when a baby (to add to the list). She was a month premature and was born with a small left colon, which too has righted itself, so can't help wondering if she had a few dodgy tubes in general. She did get reflux quite badly, which is associated with laryngomalacia I think.

[angelpops]

Hi all,

Thank you so much for getting back to me. My ds was born by elective cs at 39+5 in October 2010 so wasn't too early. He has tongue-tie and was admitted to hospital at 4 weeks old for 3 days where they did various tests and observations. Whilst in hospital they did oxygen tests, x-rays and used a nebuliser. As an outpatient he has had a barium swallow as well as a camera down the throat.

Even though, we all suspected it was Laryngomalacia from the start, I only received a letter officially diagnosing it last week. (He was admitted in Dec of last year). I too had looked online and thought it was Laryngomalacia and whilst in hospital asked one of the docs whether it could be this only to be told that she wished parents didn't look up online to self-diagnose and it probably wasn't this! Little did she know.

Anyway He chirps like a bird whilst asleep and sometimes during the day when awake or eating.

The confirmation letter says there is no sign of reflux but I think he may have this. I have great trouble getting more than 4ozs in him at any one time, he brings up a lot of milk, seems to have a lot of saliva - constant bubbles and dribbles and coughs an awful lot, like choking sounds. Other than that he seems ok in himself. He isn't putting on the weight like he should do. At birth he was above the 50% line, and he seems to be going down the chart even though he is putting on weight.

Originally I wasn't worried since he was so alert and himself but NHS direct worried me after speaking to them and they then sent an ambulance within 2 minutes to take him to the hospital. My instinct is that he is ok and not too bad. Although looking online at the facebook support groups it has made me think, ie will he have trouble weaning, speaking. etc. Is it ok to take him on an airplane.

If anyone has any advice, it would be greatly received. I am so pleased that you have all responded, it is nice to know that I am not alone! Thanks again.

[Elibean]

That all sounds very familiar to me! Over 80% of children with laryngomalacia have silent reflux, so the odds are high - trust yourself. dd improved a fair bit once she was on Domperidone and Ranitidine, and the ENT consultant who confirmed the diagnosis (at 8 weeks) put her on them almost automatically. He was of the opinion that the odds are so high that if there is a history of pain/crying after feeds, vomiting/spitting up, etc then meds are a given.

Sadly, lots of people seem to have to push for treatment for silent reflux - shouldn't happen with laryngo

Bubbly noises and any breathing issues should be improved by reflux meds if he does have reflux, by the way.

You will also get LOADS of medical professionals panicking and thinking your ds is having serious breathing problems when he isn't - better safe than sorry, of course, but IME the noisy breathing, to anyone who isn't used to it, is scary! Babysitters also need reassuring, later on

Not sure about planes?? dd didn't travel on one till she was 14 months...

[angelpops]

Hi

Thanks for your message. I took ds to the hospital today for check up and he has to have an operation to snip his larynx to help is breathing and eating. I have got Domperidone and Rantidine as well so will be using them tomorrow. Hoping that helps him asap.

Now I've just got two weeks of worrying about general anaesthetic and operation to do!

[angelpops]

Hi there,

We have been using the meds now for about a week. Although ds isn't arching his back and refusing the bottle. He still only drinks about 3 - 4ozs. He stills brings milk back up, although not as much. Is this the norm?

We have a pre-op appt tomorrow and then the surgery next Tues. I am worried about the gen anaesthtic. Anyone had experience of their lo going under?

Thanks for any comments.

[Marnie85]

my daughter is just over 2 weeks old and she has it, she also has bad reflux so the gp gave me some infant gaviscon for her, but upon taking this her reflux went from smooth milk and mild sickness to projectile vomiting with loads of lumps. I am waiting for a gp call back now to see if there is something else to help her, my midwife suggested soya milk but have no idea how this would help, she is also very agitated and will not sleep tidy, screaming and crying, but only at night during the day she is completely content and will sleep, is this normal?

[manu28]

hello mums
my son is having lm can he travel in flight for 4hrs.wanting answers desperately.thankyou

[NorahM]

Surprising to see this thread up here. My almost 7 week has laryngomalacia. I noticed his stridor. 2 days old, LM was suggested and we got an official diagnosis at 5 weeks old. The ENT diagnosed it with a flexible scope through his nose.
I'm not sure if any of the previous posters are still active but I would love to learn how your little ones fare right now...

Manu, I'm pretty sure flying is ok!

[Sophsbda]

Hi. Just jumping on this thread as my 22 week old has been diagnosed with laryngomalacia. As well as all the usual symptoms for this condition, in particular she has difficulty feeding and silent reflux and has fallen from 91 percentile to under 25 since birth. Really hoping someone can help and give advice. My doctors and HV not sure what to do. She won't take bottles, and only manages a few minutes bf at a time. Grateful fir any help and advice!

[ILoveTeeeeeea]

Hi Sophsbda

I’m sorry to hear that, it’s very stressful. Are you under a decent ENT?

[ThinksALot]

Hi,

My son has laryngomalacia. We noticed when he was around 8-12 weeks old but were dismissed by the doctor. Our son was premature and we took him to his consultant for a check up, and she noticed it straight it away!

Your child needs a referral to an ENT. They'll put a scope down her nose to check her throat and how much skin is blocking her airways. Depending on this and your child's symptoms (the decline in centiles should be noted) they'll decide whether or not to operate (it's rare to operate - only in about 10%) of cases. Our son had the op (just one night in hospital) at around 6 months old. TBH, I'm not sure it made much difference and his stridor is still really loud.

Our son struggled massively with reflux - would projectile vomit with force and refuse to feed/take an hour to feed. Your baby needs meds to help with the reflux which will help her gain weight. Our son was on gaviscon and ranitidine (this was recalled and he was put on lanzoprasole instead) - these helped a bit and he took some feeds. It was just a matter of perservering and trying little and often. We also saw an SLT to help with feeding. Once he weaned he was much better.

Please do watch out for any blue spells/blue lips as some children with severe cases struggle to breathe.

Having said all of that, most children have it midly and grow out of it on their own but given the drop centiles I would push for a referral asap.