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

[Elibean]

Hi Keith,

Just wanted to bump the thread for you (I think you've had all my possible tips!) and ask what information the consultant did give you, before discharging your ds?

Did he say much about his condition, and/or recovery, and what difference the op should have made?

[nappyaddict]

DS had laryngomalacia but the hospital said they don't do anything until they are 2-3 because it usually resolves itself. They said very rarely the obstruction to the airway can be life threatening. I presume your DS must be one of these very rare cases?

[Elibean]

Bumping again so its easy to find for person who just posted about their 3wk old ds

[Elibean]

And again

[daddynet]

Hi all,

Couple of questions, we have been up to the local NICU to see him and he is doing great.

• For feeding what positions can people recomend as we started on a tilt but he did not like that and then started upright which was a little better.
• For winding what is the best position shoulder or holding upright similar to how the NCT people taught us...

I will also start my research on the air humidifiers so any recomendations would be appericated.

Thanks

Keith

[Elibean]

Hi Keith, glad he's doing so well! The operation he had was exactly what dd2 had a couple of weeks ago, during her tonsil/adenoid removal, and the surgeon said the recovery from it was pretty easy - so hopefully he'll be home soon

We fed dd lying down on her side, but she usually did better at an angle. A few weeks later, when the stridor was worse (it gest worse before it gets better, from newborn, as you probalby know) I found propping her up on pillows, or in a bouncy seat with a soft pillow in it, worked the best - for bottle feeds (she breast fed as well until 6 months, and that was mostly on her side but not lying flat).

Winding I held her on my shoulder and just stroked her back upwards or patted her bottom gently. Vigorous winding with refluxy babies is not a good idea, just sends stomach acid back up! I also found lying her flat on her stomach over my knees was good, she breathed better on her tummy anyway...

Hopefully, having had the op, your ds will be more flexible than dd was at that age - the main symptom to manage was the reflux, really.

ANy ideas when you'll have him home? I'll ask dh which humidifier he thinks is best (we have a cool mist and a warm mist one, currently using the warm mist one) and post later.

[mishmash68]

HI MY SON 26MONTHS ALSO GOT THAT THEY JUST TOLD ME HE WOULD GROW OUT OF IT BUT SOMETIMES IT SCARES ME PPL ARE ALWAYS ASKING IF HE HAS A BAD CHEST !!

[daddynet]

Elibean,

Thanks hopefully he will be out of hospitial on monday.

I am looking at researching the air humidiers at present.

Mishmash68 - Has your son always had a loud stridor, the operation our son had was to cut 2 small "bits" away from his tracra,after he recovered from his operationhis stridor is very low and virtually nonexisitant.

I would get your GP to get a referral to the ENT Consultants for further information.

Thanks

Keith

[mishmash68]

OH YES HE HAS SOMETIMES HE SOUNDS LIKE AN OLD MAN HE SNORES VERY BAD AS WELL THANKS WILL GET IN TO GP ASAP THANKS HOWS YOUR LITTLE BOY DOING NOW

[Elibean]

Mishmash, my dd's stridor got worse from about 23 months - which isn't usual, with laryngomalacia. We took her to ENT and it turned out her tonsils and adenoids were hugely adding to the problem - literally! Her breathing at night was pants, she kept gasping for breath...and her eating was getting dreadful too.

Its nearly 3 weeks since she had tonsils and adenoids out, and they snipped cartilage for her larynx (which was still floppy at 25 mos)at the same time. She's like a new child now, full of energy, putting on weight, sleeping well.

Definitely would ask for ENT referral from GP if your ds is the same/worse than he was, though if he's slowly getting better and better they may just reassure you. Worth asking!

[Elibean]

Daddynet, we are currenlty using a Premi-Air Cuckoo - its a big humidifier, with a warming option which is handy in this weather (doesn't make the room too cold and damp, but isn't scaldingly hot either). We did have a smaller one (a cool mist one), but found it did'nt disperse as well - tended to leave dd's cot damp/wet in the morning when we had it facing towards her, and wasn't effective if we had it turned away.

I think the size of the humidifier probably needs to be in keeping with the room, we got the Cuckoo for downstairs originally - a biggish room - but dd's room is small. It works well there too, though.

Tomorrow Will be thinking of you!

[mishmash68]

thanks to those who helped get on to docs 2moz but it does seem to get worser in damp cold weather

[Elibean]

Yes, dd's was worse in winter too, probaby from background of viruses/colds/catarrh...

[mishmash68]

thanks ppl al let u know how i get on

[nobodysfool]

Yay, i have finally found this link-i hate this new layout.
Have read this thread with much interest as my ds2 was born 3 and a half weeks early by emergency c section and was taken into special care for 48 hours because of breathing problems, low body temp and low bllod sugar levels (i had gestational diabetes).
He will be 5 weeks tom
He was never ventilated and was given a 3 day course and antibiotics to cover all areas.
We came home and all seemed fine but at about a week old he started making squeaking noises, sometimes when he was fed and sometimes when he was crying.
He also seemed to have problems catching his breath (feed time mostly and night time) it got to the point where i phoned the hospital ward i was on and they recommended that i take him to A&E if i was worried.
Off we went and to cut a long story short he was diagnosed with a floppy larynx.
We were told he would probably grow out of it and that we were to bring him back in if he didn't breath for 20 or more seconds-no shit Sherlock!
He currently is about 5 seconds.
We were given no advice or suggestions to make this easier for him and they seemed very unconcerned.
We have raised his head end at night and feed him upright,keep him upright after feeds for a while as i have read reflux goes hand in hand with this condition.When does a bit of sick become classed as reflux?He is sick about once in every 10 bottles and i'm assuming thats not a problems as he is gaining weight well.

[Elibean]

I'm not keen on this layout either

Sick-wise, that sounds fine atm...but bear in mind reflux often kicks in a bit later (around 5-6 weeks with dd2) so keep an eye out. Its not just sicking up a bit, its sicking up entire feeds, OR (dd wasn't sick a lot) lots of pain - crying after feeds, arching back, writhing around type pain. The non-sick sort is called silent reflux.

If the squeaking gets bad when asleep, you can try wedging your ds on his side to sleep...we found dd far more comfortable this way, though again it didn't matter as much the first few weeks.

It honestly shouldn't be a major concern, in itself, with any luck!

[nobodysfool]

Thanks Elibean.
When he is sick it's not the entire feed but approx half and ounce to an ounce (approx as it's hard to see when its everywhere) so i guess we are not at the reflux stage just yet.
Will try propping him up on his side.
Is it 'normal' for them to not make noises all the time.DS2 only makes the noises for a very small portion of the day?

[nobodysfool]

Sorry, another dumb arse question.
What can be done for silent reflux and reflux?

[Elibean]

Meds (not dumb!) - first one they try often Infant Gaviscon, which constipated dd but did'nt work (can do, though); then Ranitidine with or without Domperidone; then Omeprazole...

[Elibean]

had a vanishing post there! Lets see if it works this time...

....and apart from meds, you can raise head end of the cot, feed upright or at an angle (we used a bouncy chair for dd early on), wind gently by stroking back or juts holding upright, rather than patting hard.

[nobodysfool]

Thanks for the med advice.
We have been raising his head end in the moses basket and alwys feed him upright.
I think we had our first episode of reflux this morning.Sick everywhere!It looked like somebody had poured a glass of milk over the pair of us.
How many times do i let this happen before i take him to the GP?

I don't mind admitting that this has made me a nervous wreck and i'm normally a confident person.I'm worried that this is a really bad condition and i know in the grand scale of things it's not but it is worrying the life out of me?
Feel free to give me a slap.

[Elibean]

I would go the GP now, and remind him/her that 80% of babies with laryngomalacia also have reflux. Its standard practice at Chelsea and Westminster Hosp. (where dd was diagnosed) to give Ranitidine and Domperidone to babies with laryngo. diagnosis: feel free to pass that on to GP if necessary

No chance of a slap though, but you can have an un MNy hug if you like - been there, felt the same, its totally understandable to worry about ANYTHING that affects a child's breathing - even though its more noise than anything else - and there are endless medical websites that say 'its a stressful condition for parents' to prove it!

And although most of the time its uneventful for the babies, in our case we did have worrying times over the first two years - so the doctors' calmness about it sometimes made me feel sort of crazy, iyswim.

Reflux is very common in all LOs, laryngomalacia or otherwise, and its a pain in every sense of the word - but it CAN be managed with meds, and should be. We gave dd her meds in a bottle with some EBM (or formula, later on when she had mixed feeding) as she spat them out otherwise - bit premature, but thought I'd mention it in case you had the same experience at some point.

Please do feel free to worry out loud here whenever you need to!

[nobodysfool]

Thnaks Elibean for all the advice will def use the "well they do in other areas".
Dh had to take ds2 urine sample to the childrens ward just to check there were no infections.All clear.
Dh also asked to speak to a pead as we were told what the diagnosis was and that was us dismissed-all the info (not much admittedly) has been gained from the internet.
The pead looked embarresed at the lack of info we were given and said it was a condition that can be lived with as it is quite common and they would only give meds if he was being sick after every bottle and inbetween and not gaining weight.
What do you think about that?

[Woooozle100]

hello - just found this thread. Not got too much time at mo but wanted to say hi. My dd is 3 and 9 mths and has this (amongst other things) Am happy to chime in with some advice and tips but reckon elibean's covered most of it

Do we all have squeaky children?

[nobodysfool]

Hello.
Looking forward to picking your brain when you have the time.