Information on living with laryngomalicia / Tips / Advice and experenice

[daddynet]

Dear All,

I have only been a member of mumsnet for over 1 week (although I am the dad..!) and have found this site surpeb, some very nice people with a lot of knowledge and experenice.

We have just been through the worest 2 weeks of our lives at present with our new born (now 8 days old) and having to go to Great Ormond St to be diagnoised with laryngomalicia and having surgey on his trachera.

I wanted to start a post for everyone to share their expeneices or tips that they could offer everyone and just a general chit-chat.

Although our consultant was very informative there is now a lot of questions i want to ask but do not have a check up for another 6 weeks.

Many thanks and feel free to post, i know i have just purchased the following:

www.babyreflux.co.uk/products/Baby-Bed-Blocks.html#

and

www.babyre flux.co.uk/products/BEBECAL-Baby-Back-and-Side-Sleep-Positioner.html#

thanks

keith

Hi Pixie

I think yours is the oldest LO with laryngo, so am sure I don't have it all covered as much or as thoroughly as you! Yup, still a bit squeaky here in spite of recent op, but not a patch on the Darth Vader we used to have in our home....we could hear her from the other end of the house, once upon a time.

NF, my GP said much the same about reflux and meds, as in 'well she's gaining weight so there's not really a problem' and tbh, what I think of that is a baby screaming in pain after every feed is enough of a problem: silent reflux is a known condition these days, and as important as pukey reflux! But if your LO is not in pain, and not vomiting often, thats another thing altogether....trust yourself: if he has a problem, you'll know it. And you're way ahead of the game already, because you know what to look out for and what to do if it gets bad...whereas I had no idea, was in the dark, and only learnt from a mixture of instinct, stress, and MN

Daddynet, how's your ds? Is he home?

Daddynet-Hope your LO is ok.

I have read about you humidfiers being a big help is it this kind of thing and when do you use them?
www.mothercare.com/gp/product/B001O45MAE/sr=1-3/qid=1233699587/ref=sr_1_3/279-4550463-9523442?ie=UTF 8&m=A2LBKNDJ2KZUGQ&n=63559031&mcb=core
Is it just when they have a cold?

morning! Hope

I've found with dd that her reflux (mostly silent though she does have a tendency to gargle it iykwim) kind of peaks and troughs. She was doing ok and we cut her meds back to just ranitidine and then it flares up again. Often gets worse with an infection. Thanks for reminder about humidifiers - ours broke so will look into getting another one

silent reflux been a real pita for us. dd gets really jerky and twitchy with it.. and very windy. Lying on right side, on a tilt works best for us. When she was younger, I sometimes put her in one of those bouncy chairs to sleep cos I couldn't lie her down at all and was too knacked to hold her her night. For winding - I found sitting her upright and twisting her slightly from side to side best

Pixie, does your dd still have issues from the laryngo? I was constantly told 'it'll be gone by the time she's 6 months...1 year...18 months...2 years...' and I know it usually is, but she's still pretty squeaky at 2.2! Hopefully nothing more, though - not used any reflux meds since about 18 mos.

NF, that humidfier looks v cool I don't know that particular one, but it sounds good. Ours is a Cuckoo by Prem-i-Air, big beast that it is...

elibean - yes she does. She is really small though so all the 'they'll grow into their windpipe' advice is prob still v true - its just she hasn't yet (can still get away with 12 - 18 mth clothes).

Its certainly loads better - cos when I look at video of her when she was a baby - squeaking every time she inhaled - tis quite hard to recognise her as same child

Ah ok, that makes sense, thanks

dd was down to 2nd centile, but since having tonsils etc out, and cartilage snipped, have a feeling she's growing very fast...

Daddynet? Just wondering how your ds was doing, and thinking of you all - hope he's home safely and less squeakily

Daddynet- how is your dc?

Can anybody tell me why the noise is much worse at night?
During the day-even when he is laying flat he doesn't make any "heep heep" noises but at night time he is so noisy with lots of heeps and snorting.Would the humudifier help or is that just for when they have colds?
The end of the moses basket is raised and we even bought one of those sausage things that keep them on his side but he is still just as loud.

Hmm, I don't know, but I noticed that too. I think maybe because at night they relax into deeper sleep, so the throat muscles relax more deeply too?

We use the humidifier whenever the air is a bit dry, which at the moment it always is - so all the time. We always did. Worth a try?

But tbh...the noisiness is just par for the course, and although its stressful for you, if it doesn't seem to be bothering him he's ok

People used to walk into our house and ask if there was a dog barking, or just look shocked and say 'thats not M, is it???!'

Can be v v v noisy!

Thanks for answering Elibean.
I'm thinking of wearing eardefenders in bed it's so loud!

I use earplugs anyway, because we live in the flight path, so yes....they do come in useful

(and they've never stopped me hearing my LOs when they call!)

Just wondering if anybody was about to answer a question i have...ds is now 14 weeks and around 9 weeks his heep heep noise (stridor??) went away all together.
The last week it has come back at night time and during feeds and he is starting to slow down with his feeds and also drop the amount-was on 6oz now he struggles after 3-4 0z's.
Is this all normal with the return of the noise?
Thanks.

hi all my 7 month old has just been diagnosed with laryngomalacia. i must add however that this was diagnosed pure;ly by listening to him which i am sceptical about. he breaths like an 90 year old. wheesing and sounding like he has a really bad chest infection. he is silent when he sleeps. he is often sick and chokes. does this sound similar to anyone elses experiances or should i push for a camera to be put down.

Hi Kelly, I'm surprised they didn't 'scope your ds, I thought it was the standard diagnostic tool for laryngo - though its true that an experienced paed or ENT specialist can usually tell from the sound.

Is the sound on the 'in' breath? Thats classic, with laryngo - as opposed to asthma etc where the noise is on the 'out' breath. I'm surprised your ds is quieter when asleep, its the opposite for my dd.

The choking etc is probably due to reflux, which is incredibly common (silent reflux, ie not always sick with it) in laryngo babies - at least 80%. If he's not on meds for that, I'd push for it asap - it helped dd hugely.

let us know how it goes

hi thanks for reply really sending myself insane over it!! he sounds worse on the out breath like a crackly wheezy sound. my family think im being over dramatic but this is my 3rd baby so is a shock as other two have been perfectly healthy. listened to a few babies and children on u tube with laryngo and they all sound totally different. will definately push for camera! thanks x

also forgot to ask alfie has an almost croupy sounding cough is that a symptom?

No, I don't think so, dd had classic symptoms (and definite diagnosis, as per camera) and no cough. Except when she had bronchiolitis - which does have a croupy sounding cough, makes them wheezy on the outbreath, etc.

I would definitely push for second opinion from paediatrician!

Good luck, hope you get clear asap

Hi all. My ds2 is now 15 months. had surgery for laryngomalacia at 13 weeks. big problems with reflux and eating carried on afterwards and to this day, he is still ng tube fed. we took the tube out for 10 days but it had to go back in, he got so dehydrated we could not keep him warm enough and he lost loads of weight. Reflux got massively better couple of months ago, but is now back with a vengeance (teething aggrevated). he is losing all of his weight he gained when he was going through a good spell. His newest trick is to happily open his mouth for eating but then he stores the food in his cheeks for ages and refuses to swallow. he happily takes another mouthful but when his cheeks overfill he just lets food go out of his mouth. He is prob in pain again from all of the sickies. he is a truly awful drinker but we found that if all else fails he will happily drink his juice from a nurofen dosing syringe!
I will investigate the humidifier, we never thought of it. btw his breathing is not too bad thanks to the surgery, he is worst when asleep.
please tell me there will be an end to it.

Sisa what a lot for you, and your ds, to go through. It does sound as though he is making progress - not a straight line, of course, but steady and all in the right direction bar teething. FWIW, my dd's reflux was only good enough for us to risk stopping meds when she got to 18 mos; she's been hugely better reflux-wise since then.

The holding food in mouth thing I've seen kids do for all sorts of reasons, but imagine you're right and with yoru ds its to avoid the pain/discomfort he associates with swallowed food - ie reflux. I think time and an improvement in the reflux are probably key, along with you not reacting too much to the behaviour, if thats possible!

Not a lot of experience here (dd's was 'only' moderate, no NG tube) but wanted to answer your post and wish you luck. Hope the teething eases asap, too.

ps just a random thought, but....dd's eating got progressively worse from about 18 months, though her reflux was pretty much gone: it turned out to be due to the growth in her tonsils and adenoids, which were effectively choking her. We were confused for a while, especially as her night breathing sounds had got better for a while then worse again, becoming sleep apnoea etc....but a quick visit to ENT made it obvious what the culprit was. Have your ds's tonsils been checked...?

Hello all - hopefully some of you are still watching this thread. Thanks for all your great information, (Elibean - a particular thanks!).

My son (second baby) was diagnosed with floppy larynx and laryngomalacia a couple of weeks back (he's now six weeks old). We got on the case right away demanding ENT reviews,after a very frustrating 2 days with him under observation by general paeds when he was one week old (they made up some wacky diagnosis about the speed of the milk causing him to inhale sharply!)...

We've been sleeping him on his tummy/side which has helped. Feeding is a bit of a nightmare with him appearing to gulp more air than milk. For silent reflux he's now on ranitidine - we quit infant gaviscon since it was making him constipated and causing him to gulp yet more air as we spooned it in (he's breastfed).

I have some questions - would be very grateful for your thoughts/experience.

1. He's only six weeks old - but I read everywhere that this condition gets worse before it gets better - is this true and when does the 'worst' normally occur?

2. Anyone have experience with domperidone? Did it help? Any side effects? The ENT guy we saw said he prefers not to give it to babies - however, my sister (Paedetrician) says its common practice where she works, and perfectly safe. The ranitidine twice a day doesn't seem to provide enough coverage.

3. Development - I can't put my son on his back to play, because of the silent reflux, and he's being held nearly constantly - he can only stand a bouncy chair for about five minutes max. How did you encourage your babies to roll/crawl etc. when it's hard to put them down!!

4. Pixiemason mentioned about 'growing into the windpipe' - does this condition affect smaller babies more severely? My son is a pretty big baby, so hoping that will stand in his favour (anyone sense I'm clutching at straws here!)...

5. Breastfeeding - is a bit of a nightmare - he can only stay on for about three minutes before he's needing to be winded or choking... it takes 2-3 attempts to get through one breast. Making it really hard to attempt any sort of routine! (perfect excuse to finally throw my guilt-inducing Gina Ford book away). Any tips for succesfully breastfeeding a baby with larynogmalacia and silent reflux?

Even if just one of the questions is answered, I'd be very grateful. It's incredible how you get more information through sites like this than through the 'professional medical' channels.

Thanks all,

Ginnie
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Hi Ginnie,

I'm glad you have a proper diagnosis, and some meds, but so sorry you went through all the frustration

dd was on Domperidone alongside the Ranitidine from 8 weeks old (when her reflux was diagnosed officially ) and never had any apparent side effects. She took it until around 18 months, when she was walking well, and we stopped all meds.

We used to put her in a bouncy chair, at 45 degrees, and attach toys with sucker thingies to nearby tables....or hang them off other furniture...but once she had the reflux meds, she as ok on her playmat/gym as far as I remember. Perhaps her reflux was milder than your ds's, or maybe it was better controlled - either way, as long as she was awake we could lie her on her back to play (I don't remember doing that till she was at least 8 or 9 weeks old, though, if not older).

I'm sorry I can't help much with feeding...we didnt' have a problem with BFing initially, though once she'd had a week in hospital being tube fed (bronchiolitis at 4 weeks) she lost the knack a bit. After that, I expressed and gave her BM in a NUK bottle, as well as BFing, and that seemed to go down well too.

What I do remember, very vividly, is that wind and general abdo discomfort was much worse from 6 to 12 weeks, then got better. I think thats partly just normal for any baby - and partly because the reflux meds had time to kick in. You may just be in the worst patch now, where a certain degree of survival (with lots of support!) is inevitable - I don't know.

I would think a bigger baby would have bigger tubes, but have no idea - what I do know is that its totally normal to be wanting to clutch at anything that says its going to get better soon, I remember that well. The largyngomalacia in itself, afaik, gets noisier - but not necessarily 'worse' in terms of breathing or reflux. The reflux is problematic in its own right, till its adequately treated.

If you try Domperidone with the Ranitidine (and dd was on max dose of both for her weight - needs adjusting as the baby grows) and its not enough, I would personally go back and ask for Omeprazole instead of Ranitidine - its the next 'step up' in meds, I think.

I'm glad the sleeping positions help - we also put books under the head of the cot, with dd. Maybe, if possible, don't worry too much about the crawling/rolling bit until you've addressed the reflux a bit more - less tummy pain will make it easier to put him down, and then the rolling/moving may help the tummy pain in return, eventually.

Sorry, long and vague answer, jsut really feel for you and want you to know you're not on your own in it all

ps I think the noise from the laryngomalacia is supposed to be at its peak at around 3-6 months. dd's was certainly very noisy, but she seemed pretty healthy at that age - once she got the hang of solids (minor blip during weaning period). It got quieter after that, then louder again when her tonsils/adenoids grew - and she's still a bit noisy at night now!

Thank you so much, that's really helpful, no least to have someone who understands!

Ginnie
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