Laryngomalacia (floppy larynx) advice?

[moriartette]

My 3 1/2 month old ds was born with a 'floppy larynx' which we were told would self correct in a short time because the sound when he breathes was becoming less noticable therefore it was a mild case- but now at 16 weeks we are still struggling with very fractious feeds (fully breast fed) - he wimpers, pulls of crying and writhes about, screaming when being burped arching his back and throwing himself around, discontented behaviour, constant squirming, a huge amount of crying and what seems like acid reflux due to raspy voice, coughing and the sudden disappearance of all his lovely 'chat'.

Through our own research we have raised the end of his cot for when he is sleeping, we are trying infant gaviscon after some day feeds (though we found this made him constipated and therefore more distressed by pooing!) and we keep him upright after each feed for at least half an hour (which is especially challenging at night). He seems to sleep most contentedly for the first part of the night, around 4 hours, then less contentedly for the next two stints of 3 hours.

To be honest we are having a very hard time, finding it very tricky to get out and about with him especially when feeding in public, and feel low about not being able to comfort him. There seems little understanding from friends/NCT mates with babies the same age who are making us feel we are over dramatasising how hard it is...

Anyone else going through the same or who can offer any advice for surviving what I imagine are going to be very tricky months ahead?

My good friend's little one has this. Affected babies very often have reflux and need medications such as ranitidine. Gaviscon often stops working after a short period. My friend had to push push push gp to get the meds due to lack of knowledge of the connection. Please push for this as my friends baby was so different and much better after treatment.

My DS2 had laryngomalacia as well as silent reflux. The stress with him meant he went bottle fed earlier than I wanted to - at 2 months , and I'm not suggesting you consider that. All my kids have had reflux, with DD being the worst. With her, I upped the gaviscon to two sachets as soon as her weight would allow and that kept us off ranitidine, which was prescribed but is still sitting unopened in our cupboard. She's 15 months now and fine. There's good advice and stuff on babyreflux.co.uk.

You have my sympathy. It's really hard. There's a thread on here for reflux babies but sometimes hard to find - have you come across it yet?

My dd had this. The paed that diagnosed her prescribed ranitidine and domperidone. Think they are much better than infant gaviscon. I have to say it was pretty hideous and she slept on my chest while I sat up in bed for months. She did outgrow it though, as they said she would. She had a camera put down her throat to diagnose it. Have they done that for your little one?

I know exactly what you are going through. You are not making a fuss about nothing - having a baby like this is so exhausting and a completely different experience to a baby with no feeding problems (I've had one of each!).

My DD2 had laryngomalacia and silent reflux. She cried for hours every evening, was awake for long periods in the night and wouldn't be pacified. That went on for the best part of 8 months. DH and I found it very difficult to cope, it nearly destroyed our marriage and I lost about two stone in weight due to stress (had 2 year old DD1 as well at the time and was completely exhausted). DD2 was eventually diagnosed with reflux and 'baby irritable bowel syndrome' (as the consultant called it) at about 9 months, by which time the worst was over. We had major problems with giving medication (Gaviscon and Domperidone) as she had a sensitive gag reflux and would instantly throw the whole lot up again. For that reason, I didn't bother with Ranitidine. Despite being a massive baby (9lb10) she dropped right down the centiles and ended up being formula fed with a 'fattening' milk until 18 months.

I would definitely recommend pushing your GP for a paediatric referral as medication could make all the difference to your sanity if it works for your DS.

Sorry, on reading back my experience sounds so negative. It was really traumatic for me, but I am a person who is easily stressed out (especially when sleep deprived) and by 18 months my DD was sleeping normally and our family had begun to recover! The only thing I'm sad about is that I always wanted 3 children, but I wouldn't risk having a third now in case they had similar problems.

At nearly 3 now, she is a totally normal toddler with no feeding problems. We were told to keep an eye on her speech development as floppy larynx can affect that but luckily she had no problems and talks normally.

I wish you the best of luck with it. In most cases, reflux improves massively when the baby starts on solid food, so you haven't got too long to endure and hopefully you will be able to get some help from a specialist doctor in the meantime.

Thank you so much those of you who have messaged already - it makes such a difference to know I'm not alone and/or going mad. The stress is putting huge strain on my family as Im not coping very well and fear Im now depressed.

I will push for a referal for more info as we haven't had a camera put down yet to diagnose the exact problem and will also push GP for next stage of meds... I think its renitadine for us as we have found the gav ok but at the amounts we need to use my DS becomes very constipated.

Will also try him on bottles although he seems to find them equally distressing but maybe I need to find the right teet and stick with it.

I want his chat back...

My baby is 7 weeks old and his floopy larycs is very clear he also has servier acid reflux which he has to have 3 meds for it realky isnt looking too good for his future as he has a server case of it iv been told it will go in 6 month the a year and now there debating that.

My baby is 7 weeks old and his floopy larycs is very clear he also has servier acid reflux which he has to have 3 meds for it realky isnt looking too good for his future as he has a server case of it iv been told it will go in 6 month the a year and now there debating that. He is on gaviscob 6 times a day ranitadine 4 tines a day and domperadine 3 times a day