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?

No idea on that one sorry Stitchy. Hope you get some answers soon.

That sounds very hard and worrying, I can't offer advice but hope you can get some help/reassurance about it soon. Please try and get some sleep where you can, even if someone looks after her during awake time in the day. Lack of sleep won't help your stress

Hi Op, this sounds terrifying, I'm so sorry you and DD are going through this.

Just in case, have you seen any videos of whooping cough in babies? It's probably nothing to do with that but worth a look just in case. I had it as an adult and it lasted months, the cough in babies can be quiet I think.

I really hope you get some answers and your DD is ok

Have you got one of those sensor pads for under the mattress?

I'd heard mixed reviews but got the angelvare one (about £250) and it was because of that I felt able to sleep and thankfully my baby had no issues. It only went off if I lifted her out of the crib forgetting to turn it off or if she rolled right to the edge of the crib which I would want to move her from anyway.

Will 100% use one again if we have another.

Hope your baby grows out of this though.

Have you tried raising the head of the cot a bit? It can be silent reflux (which doesn't have to be milk).

Hi,

Thanks all for the replies. We have just bought an angelcare sensor for under her mattress but I haven't put it in yet. She has an anti reflux wedge in her crib and pram but it often happens in her swing when she's upright or sat up leant against my legs iykwim.

I've looked into reflux/silent reflux but because it happens so long after her feeds, I'm not convinced. I'll look into whooping cough. I've watched so many videos of different types of seizures, etc but can't find anything that looks the same.

I think I'd be asking for a trial of Gaviscon. If the apnoeas stop, that will tell you it's reflux. If they don't, it's less likely.

@Lougle we tried gaviscon for two weeks after her first admission to hospital along with the raised mattresses, sitting upright 30 minutes after feed, etc and she continued to have the episodes. It also gave her horrendous trapped wind and constipation so we had to stop.

Sorry, feel like I'm being very negative but also that we've exhausted most of our options.

You say there's an unrelated lung condition, but have you had cystic fibrosis ruled out?
From your description this gunk is coming from her lungs, not stomach?

@nemeton she had a chest x ray at 24 hours and one at 12 weeks and both were fine. She has a small mass of cysts attached to a blood vessel in her lung but I don't think they have anything to do with this.

2 of my children do something like this
With ds, it was a combination of small airways, excessive drooling, reflux and apnoea (he has a genetic disorder) - he is on reflux meds, and used to have hyoscine to control the drooling. He sleeps propped up, and when younger we took it in turns to sleep with him propped up on us.

Strangely when dd2 was 10, she started having something called a laryngospasm, at first we thought it was whooping cough, she would make an awful whooping noise, be unable to breathe and then this was followed by a wierd choking gargle as she startef being able to breathe again. She had ent investigations, but it stopped when she started taking Omeprazole, as her paed felt it could be triggered by reflux with the acid triggering the spasm.

I hope you get something sorted out for your little one, it is scary and exhausting.

A friends son had symptoms that were remarkably similar - I’m afraid I don’t remember the formal diagnosis but in simple terms liquid he was swallowing was getting into his airways as what was meant to cover the oesophagus when he swallowed wasn’t working effectively. Took about 18months to get to diagnosis after which he was put in care of great ormond street and operated on there a few years later to sort.... another possibility worth investigating. Good luck 💐

Thank you @Blimeyoreilly2020 & @HazeyJaneII. It's reassuring to know I'm not alone.

I've suspected some sort of larynx/oesophageal weakness alongside reflux. Think I need to push a bit harder for this to be looked into.

I have noticed DD has started to "whoop" while she's trying to catch her breath afterwards but no coughing alongside.

Glad it's not her lungs

Hope you can get some answers from GP.

Sorry - meant what was meant to cover the wind pipe wasn’t working effectively, it’s the oesophagus the the food goes down. Long time since my biology gcse🙈. Whatever, you need to push gp to get checked by a specialist. Keep going.

Gaviscon didn't work for my daughter either, so we moved on to Carobel, which is a food thickener. It stopped everything and no constipation.

This sounds like aspiration, where liquid goes into the airways when they are feeding or saliva. The epiglobis that seals may not be coordinated or not working and the larynx oesophagus may be weak. My son is three and still suffers with aspiration.
You need to get a referral for a speech and language therapist that specialises in dysphagia. They can examine her and even do a video fluoroscopy.
My son has down syndrome, and has never been able to have liquids without thickener and always sounded wet breathing. Aspirating couple with reflux JN between feeds made him choke.
He now has a gastrostomy tube and Ratley drink orally.
Most kids grow out of it but for my son because of his poor muscle tone he won't for a long time.

It is very scarey as a parent to watch this, and pleased p go back everytime it happens and ask for the swallow tests. Xx

P. S
The term is larybgamalaysia for the oesophagus floppiness and an ENT consultant will diagnose this with a camera down the nose and throat.
Then the SAlT for the safe swallow test for aspiration.

Thanks for your reply @Grenola. I've actually done a lot of reading about laryngomalacia today and think this sounds closest to what we've been experiencing. I'm going to give the dr a call on Monday and see what they think. I might also try a thicker formula to see if that helps.

@Stitchyfingers
We going our health visitor was best for making the referrals to speech and lamguage disphagia team.
The the gp for ENT referral. Make sure they do it as urgent. She is obviously suffering a lot with this and it is so important that they get good consistent oxygen levels. Especially at night
Also request a sleep study, the ENT consultant can organise this

Which hospital are you under?

Here anytime you need any help. I've spent three years fighting for my sons health and we've been thru it all!!!

Thanks so much @Grenola I might give the health visitor a call tomorrow. COVID means we haven't actually been able to see her face to face.

She's being seen at QEH, KL.

How long did it take for them to diagnose your little one?

He had an NG tube fitted at 3 months and they diagnosed the unsafe swallow causing the aspirating and choking and going blue and chest infections.
Then think it was 9 months he saw the ENT consultant who out a camera down and sore red sores from acid reflux and diagnosed laryngamalaysia plus stridor (squeeky breathing when the floppiness causes layrnx to fold in on itself.
Then he struggled so much with the NG due to the floppiness and kept. Choking on it I refused it back in. Then finally at age 2 he had the Nissan fundiolication surgery to tighten the top of his tummy to stop the reflux choking and has a gastrostomy fitted. At Birmingham children's.
He has carobel in any liquids orally and has omeprozole liquid for the acid reflux as it still Comes up.

I think what you desperately need is them to do a sleep study, which can be done at home and it measures any breathing irrigularities and oxygen drops in the night.
X

My son had laryngomalacia but his symptoms weren't the same as this. It just caused very noisy breathing (stridor) but not the delay in breathing or choking on liquid

@Grenola oh bless you both for having to go through so much at such a young age.

DD had another episode today out in public of all places. 3 hours after a feed, still suffering with reflux but she'd tried to swallow and then could not catch her breath. I just dread the day that I don't catch her in time.

@sandybeaches74 she is quite a noisy breather. We've been to the GP several times worried about chest infections as she often sounds wheezy or 'rattly' but her chest is always clear (chest infections could be potentially fatal for her hence the repeated visits).

Should add that we've also had two stays in hospital where her oxygen levels were monitored for at least 12 hours and they were fine both times.