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Tiny baby and reflux

9 replies

SideshowBobster · 20/04/2025 08:47

My 11 week old was born weighing 8lbs 2oz on the 50th percentile. She was/is a poorly baby, spent 3 weeks of her life in NICU/HDU and has had major surgery. Since then, she's dropped to the 9th percentile. They think she might have CMPA and has been trialled on prescription milk for this. She's been on it 10 days so far. She was only taking 2 or 3 oz of milk but since the switch we're up to 4 - 5oz.

This is obviously good, but she has horrific reflux and is on infant gaviscon, but unless she's held perfectly upright basically 24/7, she's brings lots of milk back up. She's a nightmare at night because when she lies flat she immediately starts coughing and spluttering and milk even comes out of her nose. To add to her issues, she has an incredibly high arch palate, couldn't latch to breastfeed and after trying what feels like every bottle on earth she's OK with the boots own brand bottles.

But the problem we're having now is the CMPA milk doesn't mix well with the gaviscon and clogs the teats up- but these bottles just come with newborn or standard teats, no wider ones to allow for thicked fluids. I've ordered some x cut MAM ones to today to try, but last time we tried MAM bottles the teats were too shallow for her palate so I'm not holding out much hope. But because most bottles try to be natural/emulate the shape of a breast/nipple, we're repeatedly running into this problem.

She's got a few hospital appointments coming up in the next few weeks and is being seen by the dietician and SALT at various points so I'll see what they advise but I'm reaching out here too cos I'm at my wits end. I just want to get some calories into my baby and get some weight on her but I feel like nothing is working. If anyone can recommend anything in terms of bottles especially I'd be grateful.

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Are your children’s vaccines up to date?
Paaseitjes · 20/04/2025 09:04

It's slow and messy, but could you feed her from a spoon or bottle neck without the teat? We did that for a few days because the baby was born on a bank holiday and needed topping up with formula but we didn't have any bottles.

Superscientist · 20/04/2025 09:10

The increase in volume could be the reflux. I would try offering 3-4oz and see if that helps the reflux. Drinking soothes the reflux but also makes the reflux worse so they can end up in a pickle but drinking more to soothe the reflux but in turn causing more reflux and pain.
Which milk are you on? If it's not an amino acid formula such as neocate or alfamino I would ask to switch to one of them as the reflux could be in response to the milk proteins in the hydrolysed formulas.
I would also asking about whether starting omperazole to help with the reflux would help the situation

Oldmothershrubboard · 20/04/2025 09:11

Is the cmpa milk fully dairy free or is it hydrolyzed? If the latter push for properly dairy free milk as many babies still react (and reflux is a symptom) to the hydrolyzed stuff.

SideshowBobster · 20/04/2025 09:21

@Paaseitjes we fed her with a syringe yesterday, but anything that takes a long time or effort tires her out very quickly and she gives up. Plus I really need a long term, day to day solution to feeding her.

@Superscientist yeah, I think the increase in volume isn't helping the reflux, but she was as bad on the smaller volumes. Basically whatever she has comes back. I think omeprazole will be the what we end up on considering how things are at the moment.

@Oldmothershrubboard She's on SMA althera which I believe is totally dairy/Lactose free as the GP who prescribed said the same as you, sometimes they can still react the other stuff. I was really hoping the change in milk would see an improvement in the reflux, but it hasn't.

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Superscientist · 20/04/2025 09:37

@SideshowBobster that formula is one of the extensively hydrolysed formula so is dairy based but has been partially broken down. Imagine taking a pair of scissors to the front page of the newspaper. If you pick up the pieces you might still be able to recognise what the story is but some people wouldn't. For some babies the breaking down of the dairy proteins is enough for them to not recognise them as dairy.
Other babies will still react and need a completely dairy free formula such as neocate or alfamino. These contain all the building blocks of milk but have absolutely no milk in. To keep with the analogy it's like printing off each word of the story on a separate piece of paper and can't be recognised as the story any more.

My daughter ended up on alfamino after I had to stop breastfeeding for my health along side infant gaviscon, maximum dose of omperazole and domperidone

SideshowBobster · 20/04/2025 09:53

@Superscientist argh, I could cry! I thought she was on a totally dairy/Lactose free milk as this is what the GP told me they were prescribing specifically because they can still react - but having just looked at the ingredients on the tin it does still contain milk and lactose. I'm really annoyed now because the point of her being prescribed the milk she said she was prescribing is because she desperately needs to put weight on and she didn't want to risk my daughter continuing to react. So I guess she's not prescribed what she thinks she did. So I guess I'll be back to the GP on Tuesday.

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Superscientist · 20/04/2025 11:06

@SideshowBobster my daughter has a coconut allergy and her GP prescribed her 3 formulas in the space of 4 days with coconut in...then gave up!
Knowledge is patchy across GPs, we saw a private paediatrician in desperation as we had given up with the GP and couldn't get an appointment with the NHS paediatrician. Specifically requested neocate or alfamino, the other amino acid formula is puramino but that contains soya and half of babies also react to soya so in your situation I'd stick with either the neocate or alfamino.

SideshowBobster · 20/04/2025 19:09

@Superscientist It is so frustrating, isn't it. I keep being sent back to this GP because she's the paediatric specialist- so even though I request to see someone else, we're always just automatically given an appointment with her for the kids because whoever must triage the appointments just puts all the kids through to her regardless. We're seeing the dietician, SALT and 2 of my daughter's consultants next week so if I don't get anywhere with the GP surely one of them can do something. The MAM teats I ordered came this afternoon and my daughter seems to be managing with them thankfully, so at least we can get the gaviscon into her now.

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Superscientist · 20/04/2025 19:52

@SideshowBobster that's frustrating. The best gp I found was one who also had a cmpa baby but she prefaced all the helpful advice with "this is from my personal experience not my gp training".

I'm in a local parenting children with allergies group which has been immensely helpful. It might be worth seeing if there's anything like that local to you.

Good luck next week, hopefully you make progress with this!

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