Anyone else experienced this?

[Stitchyfingers]

I posted before in a different area and have come a little further but still searching for answers in my investigation as doctors seem baffled.

My DD, almost 4 months, keeps having choking episodes where she stops breathing for anywhere up to one minute. They started when she was 5 days old and were happening once every fortnight or so but is now having several a week.

To us, it looks like she's struggling to swallow excess saliva when waking up from naps. She'll wake up in a panic unable to breathe, arms jerking almost rhythmically requiring a good pat on the back to help her clear the liquid. It can be up to a mouthful of clear liquid that is released. She also sounds quite raspy when she breathes but has an unrelated lung condition that it could be linked to.

We've been admitted to hospital twice and had several tests done for seizures etc but all have come back normal. Originally they thought reflux but it always happens 2.5 - 3 hours after feeds and is never milk that is brought up.

I'm not sleeping at night anymore as she's so quiet when it happens and I'm terrified she'll stop breathing. Has anyone else experienced anything like it?

The issue with the larynx didn't cause rattling, it started with a high pitched squeak noise that progressively got worse from 4 weeks old and then settled down from 18 months onwards.

Hope you get to the bottom of it!

@sandybeaches74 was the noise constant?

Yes it started with a gasp noise at the end of a breath that squeaked and as he got older it got worse through every breath if that makes sense. It rattled and sounded like he was struggling to breathe.

I spent every night awake until the lack of sleep was sending me demented and the doctor at the hospital told me that he was absolutely fine and it was just a noise he was making, not that he was struggling to breathe. Caused by the floppy tissue in his throat. I put him in his own room to sleep after that.

He's 10 years old this Christmas Day and it's funny, I can't remember when he outgrew it, it must have been by 2 years old. There is no sign of it at all now!

I think the fact that her chest of mostly. Clear when seen by the doc is a sign that the noise is upper respiratory and potentially resulting from her aspirating liquids... Feeds or saliva or acid reflux. You defo need a referral for a swallow test or video fluoroscopy
I would also take her repetitively to the A&E for each episode and seen by peadiatrician as GP arnt best placed from. My. Experience.
We are lucky to be close to a children's hospital with a good repute via A&E who will Refer if needed.
Hope you get a pathway sorted for investigations xx

Hi OP i have only just come across this this thread. My DS is 2.5 and had very similar symptoms for such a long time and it wasn't until we he got a diagnoses at just over 1 when they reduced.

He has an unsafe swallow, so when he is drinking (or eating in his case too) the flaps at the back of the throat don't work correctly and are too slow to cover the right hole up (not very technical I know but it's how I remember it) meaning things were sitting in his lungs causing recurrent chest infections, noisy breathing (stridor) rattling even though his chest was clear, and lots of excess salvia.

He now has a thickener in all his fluids and he can't eat certain foods (most fruits). The Speech and Language therapists have been brilliant. They do an x Ray of his swallowing to diagnose and his has that repeated every 8/10 months.

My DS has had a camera down his throat, 2 CT scans and 3 swallowing x rays so far, his is unfortunately not getting any better yet but they expect he will grow out of it at around 5 or 6.

I hope that helps you op and you manage to get some answers soon!

I don’t think it’s normal. I would go to A and E. it’s the only way you will be seen properly.

Get an Angelcare and use it meantime.

Hi, I've only just seen these replies but thank you for taking the time to share and the advice.

A little update from us: we've bought an angelcare sensor for the crib which hasn't gone off yet🤞🏼Just before Christmas I pestered the paediatrician at the hospital until I got an appointment and she prescribed us with milk thickeners and omeprazole. These have worked really well in reducing her reflux and the choking. She's only had one episode in three weeks but she has had a cold/blocked nose.

I spoke to her surgeon from a different hospital over the phone and straight away he said it sounds like she's aspirating on liquids, something that's never been mentioned by the other hospital despite several visits 🤦🏻‍♀️

I've become that pushy mum but we are getting somewhere!

@Stitchyfingers

I am so glad you have got some answers. You have to become a pushy mum at these kind of things because you are the voice of your baby!

The thickeners are great and should stop almost all problems you had previously!

Thanks for sharing an update it's always good to hear positive ones.

Sounds like you're on your way to finding a solution if this milk isn't the answer but really hoping you've passed the worst stage.

Be a pushy mum- you know your baby best. Not sure if you're a ftm I can't remember but if you're finding professionals are asking this let it go over your head and go with your gut. I remember being asked a lot 'is this your first baby?' As mine had some issues when small and I was like 'yes as obviously I won't care enough about my second to seek help'  annoying but my gut proved right as yours is/ will.

Good luck
@Stitchyfingers

Are they doing any follow up on the cysts within the blood vessels to make sure they aren’t growing in size ?

Have they mentioned getting SALT involved? My DC was aspirating with constant chest infections. No one listened to me for months when I said I thought she was aspirating from reflux. I read your post about dreading the day you don't catch her in time. This was my life for years until her latest interventions improved matters immeasurable. I understand the anxiety and constant having to listen out constantly for the noise that means they are choking. And then run to them. Once my dad didn't catch them in time to flip on Xmas day. Was just stood over them in shock not knowing what to do. Needed to call 999. Keep pushing op. Don't let them fob you off

@misslml yes, she's under the care of a different hospital for this which has been ongoing since I was 20 weeks pregnant. She has to have a CT scan at 8months with the possibility of surgery at 1 year.

@paradyning thank you for sharing and I'm glad you managed to get somewhere with DC. May I ask what they ended up doing to help? And was there an official diagnosis?

Her next step is to test for a milk allergy then SALT if it is still ongoing.

They are v v complex so multiple drugs and jej feeding I'm afraid. SALT have been universally rubbish in my area due to under resourcing so don't be afraid to push