Reflux baby and formula issues

[Jchapp118]

We are at a loss. The HV n GP are no help but my partner and I are having a nightmare with this. Our DS is now 19 weeks old and suffers with reflux and silent reflux. The symptoms became evident at around 8 weeks, I was EBF but he began rejecting the breast and seemingly very uncomfortable, gassy and in pain in his tummy a lot of the time. I tried cutting out lactose but to no improvement and with him feeding less and less, we then moved into formula.

We started on aptamil for 2 weeks and back then, we were ill-informed and decided it worked better than BF as he was feeding more and spitting up less. But after 2 weeks, he went back to rejecting the feed, crying constantly during feeding and seemed in obvious distress when trying to pass wind etc. We then tried mammia formula which lasted only days.

Kendamil was next which lasted longer (3 weeks), he enjoyed feeding and his spit up lessened but he was still in pain.

We have also tried:
Aptamil anti reflux - didn't like this
Aptamil comfort
Hungry baby formulas (2 different brands) worked well but was vommiting quite a lot
Cow&Gate
Pepti - had none from this one, not even 10ml

All would have the same pattern of it either helping for a few days/a week or two, still in discomfort but he was feeding a steady, good volume until he suddenly then decides he hates the formula OR he would immediately reject the feed and/or would scream and scream whilst feeding.

I have changed all bottles to help minimise air intake, at 10 weeks we went private who confirmed he was tongue tied and had that sorted, we have paid for a chiropractor, we do tummy massages about 6 times a day, we have given him gripe water, infacol, colic drops, he has probiotics daily all to no avail or improvement.

About 2 weeks ago, after endless research, we changed to nanny care goats milk and finally we thought we had gotten somewhere, his discomfort and wind was barely there, he would still spit up but we could deal with that AND he was regularly having at least 6oz every feed! BUT he then became INCREDIBLY constipated. He is usually a daily poo-er but this had been 6 days (the doctor said the pain and constipation is normal for bottle-fed babies' !?!!?) I then had to help squeeze pebbles out for him, he was in agony 🥺

So then we obviously decided we had to change formula AGAIN. We couldn't inflict this on him no matter how 'normal' the GP sees this as being.

We decided to try Aptamil lacto free 5 days ago WHICH he hated the taste of, rejected and cried when attempting to give him but after some hints and tips, we put infacol on the teat or in the bottle which he seemed to enjoy! Regular feeding of at least 5oz and no gripe pains or tummy discomfort. He still is having clay-like poo and bunged up but we think it might just still be the aftermath of his constipation from the goats milk...

TODAY he decided he no longer wants this formula AGAIN, had 40ml from 7:30 -1 and screamed and cried rejecting the feed. We have temporarily gone back to Kendamil to ensure he is feeding often but I already can see the reflux-y symptoms return - unsettled, not napping in the day, constantly rubbing his face as well as the usual burping and spitting up even when it's been a while after a feed.

Regular reflux symptoms experienced -

Arching back
Excess wind (even an 1+ hour after feeding)
Sour smelling stool
Gripe pains
Possetting
Spitting up - curdled milk as well as straight away
Clicking tongue
Gulping
Rubbing his face
Thrashing legs
Cannot be lay down
Wont feed in public or outside of home
Short, frequent feeds
Discomfort whilst feeding
Spluttering/coughing/gagging when feeding
Dribbles from side of mouth
Hiccups often
Rumbling/rock hard tummy

He also has eczema and cradle cap hence me trying lacto free. We also sit him up to feed and hold him for 30mins after a feed.

We need help. I understand it's not good for him to keep changing formula but we have no other option. We also have no other things we can try now either. My poor DS, I am struggling so much seeing him in so much pain and need to try anything to reduce that pain but don't know where else to go

Has anyone else experienced this aversion to formula with their child or have any ideas on what we can try?!

Sounds like he's got Cow's Milk Protein Allergy and this has been exacerbated by the Tongue Tie.

Has the TT been divided now?

If it is CMPA, which it does sound like, especially with the eczema, all of the other milks that you've tried won't help, apart from the Pepti, which is still made from Cow's Milk by the proteins has been hydrolysed, making them easier fir him to digest and less likely to cause a reaction.

Could you go back to the Pepti and try adding Nesquik or Vanilla Essence to make it more palatable.

The trouble with continuing with the formulas that you've been trying is that if it is CMPA, and it sounds very much like it, you're risking him developing a feeding aversion.

Don't take my word for it though, have a read of the article on CMPA from Allergy UK that I linked above and give their Helpline a call

Thank you so much for your opinion and providing the articles will definitely reach out and have a read! We were under the impression it was some sort of issue with cows milk but assumed it would have just been an intolerance as we have never fingers crossed has any red flag symptoms. We have gone back onto pepti this morning so here's to hoping! Vanilla essence?? Im a FTM so instantly would think we can't give that to babies, but will give that a go ❤️ thanks again!

And Yes, we had the division done around 10 week mark.

Gripe water can make reflux symptoms worse. Same with infacol as the orange flavour is acidic- dentinox colic drops are better.
my son had a milk thickener(carobel) to help keep the milk down and then omeprazole to help with the pain. If you change things up you need to give them a few weeks to work.

my son would only drink little bits sometimes but you seem to keep changing the formula way too often- this can cause tummy problems.

It used to be called an intolerance but it's actually recognised now as an allergy.

There are two reactions to Cow's Milk Protein, ige which gives immediate symptoms and non-ige which used to be incorrectly called an intolerance and gives more delayed symptoms.

I'm non-ige but do get stomach pain as soon as I've had anything with milk.

And yes, you can add vanilla essence or Nesquik for flavour. That's operetta standard advice with the hydrolysed/amino based formulas.

If it's a choice between a milk that making him incredibly ill and unhappy or a less palatable milk that he's going to feel better on, a few drops of vanilla essence isn't really worth worrying about

Agree with @Danikm151 too. You could try adding Dentinox to the bottles.

@Jchapp118 how have you been getting on? I’m in the same position! We’ve started goats milk which I think is helping him but I think he now has a feeding aversion and doesn’t really want anything in his mouth!

@SassyPants87 I've seen on your other posts that you think you LO has CMPA, please don't give them goat's milk formula if you suspect CMPA. Not sure who's advised that but it's terrible advice. Poor wee thing must be in agony!

Did you manage to speak to Allergy UK? Did you have a look at the book on feeding aversion that another MNer mentioned?

So we are on day 8 or 9 of Pepti and it's going well, finally!!! He's pooping and trumping regularly and with minimal discomfort, we also have been putting nesqik in the formula to make it more edible and he seems to be a lot happier!!! I have an app with a dietician but it isn't till the end of Feb. The one thing I will say though, he's vomitting more in quantity and frequently, could be 2 hours after a feed and he will spit up but we can deal with that!!