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Children's health

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Laryngomalacia or developmental issues or nothing to worry about?

5 replies

MOGMOGMOG85 · 14/06/2021 10:03

Yestersay we went to a and e as my boy was not breathing for a while and then short shallow breaths intermittently.

We were seen by 4 doctors. 2 of them (standard doctors) said it was basically a random thing that was nothing to worry about.

The senior paediatrician saw my boy on top form trying to leap about, roll everywhere laughing at her and grabbing things off her face. She also heard him make this weird pigeon noise which he has made intermittently since birth, after feeding when excited, and sometimes at night/first thing in the morning. After feeding the noise used to be worse but now its first thing in the morning and it has been particularly bad since the weather warmed up. I had noticed his breathing being affected before but if I turned him over he was always fine, but it took him a long time to come round yesterday hence we called 999 immediately. I feel awful that I never thought anything of it before but the truth is his first few weeks of respiratory distress on CPAP in an incubator were so bad and I was told to expect erratic breathing from time to time. The senior paediatrician however said now at 7 1/2 months it cant just ve dismissed as a baby thing. I also had feeding support for a week and was told that him choking on his milk was normal. A breastfeeding support worker also told me it was fine. So I think I've been desensitized to choking and feeding problems. Getting milk into him was a nightmare from day 1. For 2 months he choked nearly constantly on his milk and wouldn't stop choking until I tipped him forward to physically stop the choking. Then 2-5 months he continued to choke an awful lot but at least could cough himself to clear his windpipe.

Now at 7 1/2 months we have been weaning for 6 weeks and the choking has been constant. Again everyone says to expect choking but most people seem to say that it resolves after a few days, not 6 weeks. He is starting to be able to occasionally swallow soft solid food so he does make progress but it just seems quite slow and painful compared to other babies.

Anyway the senior paediatrician thought it was laryngomalacia which she said usually resolves by itself but does require urgent action if it deteriorates.

She then referred me to ear nose and throat and they came along and saw my baby when he was tired and said it was a developmental thing. They didnt seem to believe me about the noise unless the heard it themselves and they dismissed it being a physical thing as it is intermittent.

My understanding is that laryngomalacia is intermittent? I strongly feel that it is a physical thing as my boy has no developmental issues and is very alert curious smiley and strong. I feel the ent didnt listen to me and made a judgement based on 2 minutes of my babies life where he was exhausted from being in a and e for 7 hours. I am getting to see a senior ent this week.

If it is laryngomalacia a laryngoscopy will diagnose it. He will have to be put under anaesthetic to do that because of his age he will not cooperate with the test.

I guess I'm asking has anyone else had experience with this? And should I push for a laryngoscopy? They offered to do one yesterday but they said they only had an adult endoscope at it would be "quite brutal" so I declined. But think I will push for a baby endoscopy. As much as I dont want him under anaesthetic, i never want to wake up to my baby not breathing again and I dont want a physical exam to be ruled out based on one doctors analysis based on 2m with my baby. I feel something serious like interrupted breathing needs physical obstructions ruled out...

Hard choice for me as a lot of conflicting info xx

OP posts:
sandybeaches74 · 14/06/2021 10:14

Hi, my little boy, now 10, had this. He made the noise you are describing which was a bit like a squeak at the end of his breath.

As he grew, the stridor (noisy breathing) became worse until he was about 18 months old but after that and since about 2 years old, his breathing noise is completely normal.

My son just had checks at the hospital every year and didn't have to have any type of procedure to diagnose it or treat it. He was discharged as a toddler. I had a very knowledgeable consultant involved in his case who said the best thing to do is to wait and see the improvement.

This caused me a lot of anxiety at the time but hopefully this offers you some comfort Thanks

Indoctro · 15/06/2021 04:45

My son was born with his, very noisy breather and used to cough all night long. He was referred to respiratory department till he was about 3.5 years old and checked every 6 months. They only do further investigation if child fails to thrive , ie becomes very underweight as body working extra hard to breath

Even now he is quite a noisy breather but because his weight was ok ( but definitely on the low side) they left him be. He is now nearly 5 and no real issues just a bit noisy at times especially when sleeping.

ThinksALot · 18/06/2021 18:31

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! It's a very particular sound - lots of people commented on how noisy he was and assumed he was constantly battling a chest infection.

Your child needs a referral to an ENT. They'll put a scope down their nose to check their throat and how much skin is blocking their airways. If it is laryngomalcia depending on your child's symptoms 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.

Our son struggled massively with reflux - would projectile vomit with force and refuse to feed/take an hour to feed. This is associated with the condition. It sounds like your child is struggling to feed too. Your baby needs meds to help with the reflux. 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.

Having said all of that, most children have it midly and grow out of it on their own. Our son is now 2 - he has no problems eating or drinking milk but still gets his strider if upset, tired or full of cold!

paradyning · 18/06/2021 21:17

I don't know too much about this but try to get video footage if it. It is so frustrate be dob we off by health care professionals who really should know better by now.
Also is it worth pushing for a SALT referral?

Blueskytoday06 · 18/06/2021 21:23

My daughter had hers corrected via surgery at 3 months old. She's now 8. She needed it correcting because she was failing to put on weight despite high energy milk. Plus she was super tiny to start. All good now .

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