anyone experienced noisy/stuffy breathing in newborn - poss layrnx??

[mad4mybaby]

ds2 is 6 weeks and since hes been born hes been very stuffy in his nose and snoring and snorting. i was told just newborn mucus. this went on and day before xmas eve he couldnt breath. next day went to gp who said chest and lungs clear and he was just catarrh and to keep doing what we were(steaming, nose drops etc) we bought an air humidifier aswell. anyway yesterday he was struggling to breath again so went to doc abd he said chest and lungs still fine and that the problem is from his neck upwards and that he may have something wrong with his layrinx or oesophogus. We are seeing paediatgrician tomorrow for his silent reflux and doc said i need to talk to her as it needs looking into.

bit worried now, has anyone any experience of this and any idea what could be wrong?

tia

My dd2 has laryngomalacia (floppy larynx) which was diagnosed when she was 4 weeks old, and was hospitalized with bronchiolitis. Up until then, they all said 'newborn mucous' and not to worry....but the paeds spotted the noise immediately.

If your ds does have a floppy larynx, its not usually too much of a problem, though it depends how severe it is, because extreme cases can need surgery if the condition gets in the way of eating or breathing. dd2's is moderate, no treatment needed, but she's been at higher risk of complications from upper respiratory tract infections and has had the occasional tricky patch with eating. The important thing to hang on to if it is laryngo, is that the noise and struggling is usually far more stressful for the parents than the baby...and btw, our humidifier has been used nightly for two years and is the best thing we ever bought. Especially when dd has a cold.

Silent reflux goes hand in hand with laryngomalacia in over 80% of cases, so if your ds does have it (and if he does, he'll grow out of it, btw) that would explain the reflux. Meds helped dd in more than one way, because the reflux makes the breathing worse.

FWIW, she's now 2 and full of beans, though needs tonsils/adenoids out this month...not related to larynx, though.

I know how worrying anything to do with breathing is with newborns, do let us know how the diagnosis goes and if you need any more info from me about laryngomalacia, after you've seen the doc, feel free to CAT me anytime

aah thanx! How do they diagnose? they wont do anythng invasive will they? The paed said if ranitadine didnt work hed have to have tube down him for 24 hoyrs to measure acid. really dont want to doit to him but needs must. he is already on neocate aswell. ds1 had awful reflux and was projectile sick ALL the time and on domperidone and omeperazole till he was one but thankfully ds2 not as bad

Unfortunately, they use a laryngoscope, for a definitive diagnosis, so yes it is a bit invasive. dd didn't have that done till she was 8 weeks old and back in hospital with another noisy cold, and although I dreaded it it was very quick, she wasn't very upset by it, and ultimately very important in giving us the information we needed.

She hasn't needed it again since (though one annoying registrar wanted to once, 'just to see how its going' - I said no!) because the condition doesn't deteriorate. TBH, though it was upsetting (for me) at the time, I'm so glad now she had it done as a tiny baby and not as a more aware older baby or toddler.

ps laryngoscope = v v thin tube, was only in for a minute.

And dd got by with ranitidine and domperidone, which we stopped when she was about 18 months (late walker!). Got to run now, but will check back later, or CAT me

did she get alot of colds? Or were the cold particulary bad? It is like he has a severe cold. Breathing is really hard for him and someone told me they cant breath through their mouth yet? Id say that it IS affecting breathing obviously... so worrying, if its not one thing its another

Hmm, well, got a lot more colds than dd1 but then she has a big sister and dd1 didn't...

Yes, its worrying, I'm so sorry. All I can say is get as much reassurance/advice from doctors as you need - its known that breathing/larynx things with babies are v stressful for parents, they'll understand.

Hope he's ok today, xx

Dear All,

I am wondering if you could help, my son was born 4 days ago and has some breathing problems very simlair to what Elibean has been decribing.

I am waiting for the ENT specialist to have a look at him but they can not make an appointment for another 3 days, of course this is very worrying time at present and just wanted to ask for more information.

Thanks

hi daddynet, i was just about to put another thread on asking for any opinions for m ds AGAIN! Dont know if you read my original? To answer you, tell us how your LO is? What is happening?

To all others, opinions again?? ds came out of hosp and them gave him the barium xray which they said there was no reflux going onto his lungs (good thing) but his breathing has not changed. They said def reflux and trebled his ranitadine and gave us domperidone. This morning ive noticed he makes a wheeze type noise when brething out. Anyone?

Wheezing when breathing OUT in older children can be a symptom of asthma...they tend not to diagnose it in babies, but worth asking GP IMO. It could also be an after effect of the tests?? Not sure about that, but maybe call hospital ward he was on, and ask them?

dd had a lot of wheezing for a few days post-op, and it was due to the bronchoscopy she'd had during the op...not the tonsil/adenoid removal itself, so I was confused till someone mentioned it.

Hope it passes quickly, glad he's not refluxing into lungs at least. Did they check his larynx??

hi elibean, no this is what he has had literally since he was born....they did the apneoa monitoring and had the sats (?) machine thing on him and although the alarm did go off a few times whilst in hops they said it wasnt anything to worry about as he hadnt gone blue or need oxygen or anything...

it still sounds as though he has a vv bad cold although still no snot or any other sypmtoms. Again in hosp they listened to chest/lungs and said they sounded clear... they didnt even discuss layrinx...

Hello daddynet, sorry you're going through this...its so upsetting with such a tiny baby, and so soon after birth. Is your ds in hospital, or at home? Is he making mucousy sounds, or struggling to breathe?

If he has mild to moderate laryngomalacia, the good news is that its not dangerous for the child, in itself - does add higher risk of needing hospitalization if they get an upper airway infection (like bronchiolitis, for example), and is very stressful for poor parents because of the noise!

Trouble is,you wo'nt get a clear diagnosis till you see the ENT team...I know 3 days seems long with a newborn, too.

Mad4, odd they did'nt discuss larynx. Hopefully, the meds will sort it all out - because reflux can cause all sorts of wheezy, raspy, sore throaty noises, its true.

But if it carries on, I would push for some feedback on his larynx - it WAS a doctor who mentioned it, so you're entitled to more info!

thursday night was when the medication was upped. supposed to be seeing the paed in about a weekish, got to ring tomorrow. Is annoying that they dont see it as a serious problem yet he is struggling because of it..

M4Baby / Elibean,

Just come back from visiting him, not sure on the acronyms you guys use as this web site is new to me..

Anyway my wife had a c-section and was discharged yesterday so we had to leave him there. It is now day 3 of his arrival and has been in a incuebator (if that is how you spell it). He is now having milk but they have given him an x-ray and can not find anything.

His breathing is very hard i.e stomarch going up and down a lot and it sounds like a heavy wheeze (I used to have asthma when i was a kid) but not as deep as a snooring noise.

My wife describes it as a little hamster breathing but of course no one is telling us much until the ENT guys have been...

Just wondered what other peoples experenice are, is it curable or does this stay for life... people mentioned air humidifers etc.....

thanks

keith

That must be so hard on you both (leaving him there, I mean)

It sounds unclear as to what the problem is, as yet? If its laryngomalacia, then no, its not a condition that should impact for more than a couple of years or so - but if its severe, they may want to operate to help with breathing and feeding. If its mild to moderate, then its liveable with - and kids grow out of it, as they mature and their windpipes get larger, it doesn't matter so much that a portion of it is a bit 'floppy'.

But, and its an important 'but', that diagnosis hasn't been made yet - if it is, there are a few of us here who have experience of it, so feel free to ask as much as you want, whenever you want.

Humidifiers have helped a lot, especially when dd has had a cold - so might be worth investing in one, in due course, but I'd wait and see what ENT say first. Why is it taking so long to get him seen by ENT, I wonder?

thanks elibean and i totally agree on what you saying but at present i am not very happy with our hospital.

Due to a bed shortage they discharges by wife early 2nd day of her c-section, they took our son down 2hrs after he was born and no one in NICU updated the ward. The NICU staff are great but the communication chain is a joke.

I have tried to ask why we can not get a ENT person there ASAP i would even pay private for it but all i get is "the team go between 2 hospitals" or "you know it is the weekend"....

The local doctors think it is floopy lanxy, he isbreathing ok on his own and feeding milk through a drip and all the midwifes mention the stridor.....

I think i am getting more information off the net than off the NHS...

Thats horrible for you, not trusting your hospital, I mean. Adds so much to the stress. At least the NICU staff are good, and I suppose thats the most important part right now...

Also, I forgot it was the weekend - even in the big teaching hospital dd was in, ENT staff only came on ward during the weekend for absolute emergencies. Thats fairly standard, I'm afraid.

If it IS floppy larynx, then at least thats a well known, well researched thing as opposed to the 'we're not too sure..lets try this and that...' sort of condition. The ENT team, if they agree its possibly laryngomalacia, will probably do a flexible laryngoscopy - they pass a very thin, flexible tube with camera down the baby's windpipe, to have a look. dd had it done at 8 weeks - she wasn't happy about it, and did cry, but it was very quick and well worth it for the information. I'm told its annoying more than painful or uncomfortable, by adults who've had it done, FWIW.

And then, if it is that, they will decide how severe it is and whether your son needs surgery to help or not. dd didn't, though when she had her tonsils out ten days ago, they had another look at her larynx and did decide to cut two tiny bands of cartilage either side of it, to help her breathe better - as it was still pretty floppy.

If its mild or moderate, it means your ds is ok feeding and breathing, and he won't need surgery. The only difference it will make will be that he will sleep better on his side or front (we used to wedge dd on her side when she was small, she's never slept on her back), and will need a bit more vigilance when he has nasty coughs/croup/chesty colds etc. He may well also have a degree of reflux, which happens in 80% of laryngomalacia cases, and is easily treated with meds - dd took Ranitidine and Domperidone in her milk, 3x daily, till about 18 months old.

Its also stressful to hear the noisy breathing or stridor, till you get used to it

Let us know what they say, is his appointment on Tuesday?

Elibean,

Thank you for all the information this certainly does help, the appointment is Monday and we all both going to try and stay there all day to see the consultant.

The problem we have is we have another S aged 3 and a D aged 19months so it will be hard.

Can i ask when they had a cough / cold do you tell your GP that they had laryngomalacia (i still can not pronouce it)...

We want to be there so the consultant can explain everything.

Thanks

Keith.

I'm glad you don't have to wait longer than tomorrow for your appointment, at least.

I understand the difficulty with older LOs, I have an older dd who was 3 when her sister was born.

Yes, we've always made a point of telling GPs about the laryngomalacia - they've all heard of it, but many haven't come across it, its fairly unusual (not rare, though). Often, GPs have panicked when they've heard dd breathing and asked immediately 'is that normal for her?' - because stridor in most kids can mean a chest infection etc. dd has probably had more antibiotics than she needed, as GPs couldn't always tell whether her chest was clear or not - too much referred noise from higher up - but we've been happy to err on the side of caution, with her. Nowadays, at 2, she's a lot better - and GPs can tell whats chest noise and whats throat/larynx noise.

And now she's had her tonsils and adenoids out, and the cartilage bits snipped, she's absolutely great - no noise when asleep at all, its very weird for me after two years of hearing her all over the house!

Will be thinking of you and your wife and ds tomorrow, hope it goes well.

thanks i will keep you posted cani ask what DD / DS and LOs mean?

daddynet, DS is dear son, dd dear daughter and LO is little one look up above and click on acronym list and will give you all the abbreviations. hope today goes ok.

elibean, what do you think i should do with my ds? Sorry i keep asking you but really unsure. His reflux has improved since we got out of hosp but breathing is still the same...

Sorry, daddynet, abbreviations get to be a habit around here

Hope it goes ok today, thinking of you both.

Mad4, no worries...just wish I had some answers! When is your next appointment? Do you feel safe waiting until then to ask more questions about the breathing, larynx etc? If so, I wouldu do that. If not, then I would go to the GP and ask for an ENT referral based on what he/she said about possible floppy larynx. It doesn't sound as though your ds is in danger from having too low oxygen levels, though you might want that reviewed if he catches croup/RSV/nasty cold etc.....but you have a right to ask for the noise/wheeze to be explained, I think.

All,

We have just found out that the ENT have referred him to Great Ormand Street and they have took him off his milk feed,

Has anyone else had this happen?

No, I'm sorry, I don't know what that means...did they not tell you more than that? I do know its normal to take babies off milk feeds if they're worried about their breathing, or energy levels, because it takes a lot of energy for babies to drink milk. When dd had bronchiolitis, she was given breast milk through a thin tube passed down her nose into her stomach (feeding tube).

VEry for you that it wasn't an easy, fast, straightforward answer - GOSH is a wonderful hospital though, do you know when he's being moved? Are you in London and able to get there easily?

What a nightmare for you both, with three young ones, I'm so sorry...let us know when you can.