Any advice much appreciated - can’t carry on

[Anothernewmum1]

My first mumsnet post - hoping for some reassurance or advice because I feel very helpless. This is long - sorry! My baby is 8 weeks old and EBF.

Baby has always had lots of hiccups - he doesn’t seem bothered by them. Weirdly the baby has NEVER ever posseted or been sick. Even when he chokes he doesn’t spit milk out.

Since around week 2 he had intermittent green poo - smelt like vinegar a lot of the time. We had it tested and they said no infections present. We assumed a cold but it’s still intermittent and we’re now on week 8. Saying that it’s seemed less since I have cut dairy 2 weeks ago but his other symptoms have remained so I don’t want to cut dairy if it isn’t the issue.

Around week 4, after a tongue tie snip (may be coincidental), baby started with some symptoms:
-Choking - like proper choking. Sometimes in his bassinet when lay flat. Sometimes during feeding. he can usually right himself by coughing. It lasts a few seconds where you can see he is trying to breathe. Sometimes he needs to be lifted upright and patted on the back to breathe again. These episodes don’t seem to upset him - but my nerves are in tatters all day. I can tell sometimes when it’s doing to happen on the breast because he goes quiet and seems to stop breathing.

-coughing and sneezing through the day

-forehead goes red/purple - sometimes around his mouth is a bit blue.

-awful congestion - especially around 4am onwards. A humidifier in the room didn’t seem to help.

-arching of his back after feeding.

-excema on head

-grunting and thrashing constantly in sleep from around 4am

-strider and snoring sometimes

We have been to an and e after a choke and they said reflux. We hold him up 30 mins after feeds and that doesn’t seem to make a difference. Our GP has given omeprazole and told me to cut dairy: they really minimised the choking which is my main concern -
especially aspiration. Both of these things haven’t had an impact other than slight reduction in green poo. again, I don’t want him in omeprazole if it isn’t needed.

The positive is he never seems in pain which I’d expect with reflux. He doesn’t cry lots.
I have hated these last 8 week and don’t want to feel this way but I don’t know what to do for the best. Thank you for reading and I’m sorry it’s long. I want to feel listened to and I feel like I’m letting him down.

Have you seen a lactation consultant? The GP or HV will not only be useless, but can actually give you bad advice on breastfeeding.

Do you think you have a fast let down?

Blue lips usually indicates they need winding.

Some babies do need winding even on the breast.

If you haven't already seen a lactation consultant then the medication has been given too soon imo.

Sorry if this comes across as blunt, I'm just in a rush! X

Echo PP that the coughing/gagging/spluttering is likely to be a fast let down. You can look at different positions to minimise this. This may also explain the green poo, which can be normal in a EBF baby. I know babies who have had CMPA and it’s not just a little green, it’s every poo and projectile vomit.

As a bit of reassurance, a gagging baby isn’t choking. Choking is silent. https://www.nhs.uk/start-for-life/baby/weaning/safe-weaning/choking-and-gagging-on-food/

Eczema: if it’s not bothering LO don’t worry as lots of these things are grown out of by 12mo. You could always add breast milk to a bath to sooth it. Avoid perfumes etc.

Many dairy sensitive dc are also soya sensitive. You could try cutting that out and see if it helps.

Not blunt at all! Very helpful - thank you. I agree about the medication. Happy to give it but if it’s not needed he’s far too little.

I don’t think I have a fast let down - never see any spraying or milk dribble and he seems to actually cope well during letdown. It’s more at the end of the feed the choking can happen and sometimes not on the breast at all. Almost like he’s choking on congestion.

We saw a lactation consultant who did our tongue tie so I will get in contact with them and see if we can go back for follow up advice.

@PurBal
thank you - really appreciate you responding. He definitely starts choking which I then suppose turns into coughing. He is silent at first which lasts for a few seconds then he draws breath.
could be letdown but it’s usually nearer the end of a feed and can happen even no where near a feed. Like he’s choking on his own tongue or congestion.
Great idea about the excema. Will try that tonight.

@SeaToSki thanks - it’s definitely something to consider. I had read that but it’s a lot to cut when it’s guesswork I suppose. I had expected the dairy cutting to help even a little bit with his congestion but it’s almost been worse.

Has the omeprazole helped at all?

@jesshomeEd
No I haven’t seen an improvement (we’d done a week and a half) but it’s hard because I know sometimes doses need tweaking and that it can make things worse before better.

I think there's multiple issues going on, which does make it harder to diagnose.

My son suffered with silent reflux, made worse by me eating acidic or oily foods. But he also has a wheat allergy which causes congestion, particularly in the middle of the night. This affected his breathing during his night feeds.

It's tough but might be worth experimenting cutting out other foods. (Also on that note, most foods are out of yours and your babys body within a couple of days, its only dairy which takes several weeks to clear)

Just coming back to update for anyone who ends up here in a similar position.
ENT said silent reflux and Laryngomalacia. He’s said omeprazole for now and scope in 4 weeks if no improvement so fingers crossed we’re on the right path now!

Thanks for coming back to this! Same situation here with the choking, GP has prescribed omeprazole though so fingers crossed it works for both of us.

Months later… this is happening (all of it) to DD & I while BF but also when she lays down. Did you see ENT and Lactation Consultant? How did you find a Lactation Consultant if I may ask?

I’m a nervous wreck as DD is 8 weeks and has done this every feed since but never thought anything of it as she would cough it up until I’ve read it can cause pneumonia???

Ball of nerves — sorry for commenting in old post. Hope all is well resolved now. xx

@Cmuxx
You are not alone - although it definitely feels like it.
My baby is now nearly 6 months old and some things have really improved. It’s still hard and we’re still muddling through though.
He is on omeprazole still and I can’t see how this will be stopped anytime soon. Choking episodes are now very rare thankfully although on the breast he still struggles sometimes with spluttering but this just seems to be a let down issue.
His reflux is still there and we still hold him up after feeds. It seems to affect his sleep too and definitely gives him congestion. I am dairy free - on the advice of the doctor but I doubt he has CMPA. It’s so hard to tell.

lactation consultant was a bit useless. She was qualified but I don’t think she knew what she was talking about or didn’t listen very carefully. She suggested I didn’t have enough milk but I could pump 2 feeds in 15 mins so I don’t think that’s the case. The ENT specialist was the best but there are also groups on Facebook that are very helpful. Search for reflux or silent reflux.

Yes - if they choke, they can aspirate which can become infected. That said, our ENT said breast milk is unlikely to get infected. Considering he choked every day and probably now does every week or so, he hasn’t had chest infections (touch wood).

Sorry that’s a bit rambly - I don’t know what to tell you other than it’s still really hard BUT his personality is now shining so things are easier in that regard. I found that my MH is wobbly and I really think it’s because it’s so hard - medicine won’t fix my situation so I am reluctant to take it.
x

Can I just say… you have been an absolute breath of fresh air. Thank you so much for 1.) starting this thread 2.) replying back. The past few weeks have really made me feel alone and quite helpless as Health Visitors seemed to discredit my concerns and DH is traveling about for work across the globe. Unfortunately, I am glad to see that I’m not alone.

So, we’ve just seen the GP today. She resorted to reflux, laryngomalacia and a suspected cold with congestion as well. (Also told to avoid dairy???) GP prescribed our first ever to-be-taken omeprazole and assured things would calm down. Said to not worry as seems all three happening at same time. Not sure that I’m quite convinced. (Might I just add, she also had her immunisations at the appt — great.) Did you really see an improvement upon starting the Omeprazole?

Of course she said if we were really worried, she’d be happy to refer us to the Paediatric Assessment unit at local hospital; however, I have went out on a limb and booked in with a Private Consultant who specialises in Feeding difficulties and Reflux this week.

The choking and coughing really is quite terrifying. (interesting you said your ENT said breast milk less likely to get infected as that was my biggest ever fear — chest infections or pneumonia)

So happy to hear things have calmed down a tad for you with no episodes happening since — sounds we have a long road ahead.

In regards to your MH, I suppose all in it together and just want what’s best for our babies — however I take light in the fact that as mums we are doing the best thing by picking up on these things and getting our LOs seen and sorted. We’re doing all we can with what we have available to us. I’m finding I have a grey cloud over my head and often out of touch with the present day but as the above, just keeping on cracking on. The best we can do. ❤️

@Cmuxx sorry for delayed reply. It’s very hectic (as I’m sure you know) and I am finding it hard to even keep up with basic needs like eating and washing sometimes!

You are definitely not alone. I also can’t imagine how hard it must be with a DH who works away - full admiration there.

Avoiding dairy is a PITA and I still don’t know if that’s our issue. Violife is the best cheese sub… and it’s still not great.

omeprazole wise we did see an improvement but he still very much has reflux and we still need to hold him upright etc. it’s also a nightmare trying to get him to take it.

Hope you get on well with the private consultant. Don’t forget that you’re paying for it so make sure you ask a million questions!

Really hope your little one improves soon - it’s hard enough without all the health worries added in xx