Baby feeding nightmare

[Thompsc]

Has anybody got any experience with what I’m going through because I’m truly at the end of my tether and feel hopeless right now 😞 my baby has just turned 13 weeks and although we had a rocky start she eventually settled on Nutramigen and carobel to thicken it for silent reflux. She has CMPA and has had blood/mucus in her stools so after several milk challenges we accepted that she definitely has this allergy.

She usually drinks around 5oz every 3-4 hours. The last 2 weeks after 2/3oz when I wind her she refuses any more of the bottle, she moves her head away aggressively and almost crunches her stomach like she’s in pain. When I remove the bottle though she tends to be okay. Sometimes after a long break maybe 10/15 mins I can get the rest down her but other times I can’t. I’m so stressed because I know she’s not taking as much as she should. I thought maybe silent reflux but there’s no back arching etc it’s just uncomfortable Tummy pain, it’s EVERY bottle apart from dream feed but that tends to be less oz anyway. I’m so worried it’s a feeding aversion and it seems like it could be behavioural but I just don’t know 😞

She also seems to have mild oral thrush which I wasn’t sure was just a constant milk tongue from the reflux, I got some daktarin for it and she throws up a full feed every time I put it in her mouth because she has an extremely sensitive gag reflex. I even tried nystatin because it’s a liquid rather than gel but same thing, throws up full feeds. I don’t know what to do anymore, I’m going to take her to the GP tomorrow because it’s making me ill genuinely the stress. It makes me so upset if makes me think I just want a normal baby although I wouldn’t change her for the world 😞 any advice welcome
Edit: some maybe pointless info but incase any of this helps

• she sometimes chokes on her milk even when thickened, never sure if it’s because too fast a flow or if there’s something else going on

• she takes pauses in her breathing usually when asleep sometimes after she’s had a long cry, then swallows and starts crying, always assumed this was silent reflux

• I recently tried a milk challenge except I wasn’t told how to conduct this so have her 1 bottle of regular formula for 3 days. I stopped over a week ago, not sure if this has made things a million times worse because the fussing on bottle began before I did this, she’s definitely allergic though so I know it can’t have made anything better
• she sleeps through at night, usually 9-7ish so I think her reflux can’t be that bad and is probably mild?

Sounds like trapped wind. Carobel gave my DD terrible wind and tummy pain.

What happens if you don’t stop to wind her and let her drink however much she wants? I remember my DD got annoyed with me stopping to wind her after a certain age so I just let her drink and she’d stop herself when she needed winding.

@Thompsc
this is story of my life.
my LO refused breast/bottle after 3.5 months. He is nearly 7 months now.
I am also going through a lot of stress.

get your LO check for tongue tie. Because sometimes if there is a tie babies will chock on milk even though if they are drinking from bottle.

also have you heard of cell salt?
google it I heard it’s good for reflux. Need to try for my LO.

best wishes.

Havr you considered that it may be behavioural and that she may have developed a feeding aversion? Researching Rowena Bennett and reading her book was the turning point in our own feeding journey and I’m so thankful a post on here led me to it.

Who told you to carry out the milk challenges? This is something that should have been explained how it’s done if it needed to be done. You start off with one scoop of standard formula and the rest of the bottle is allergy formula. This is only for the first bottle of the day. Rest is allergy formula. The next day two scoops standard and rest of bottle allergy formula and again only first bottle of day. This continues until first bottle of day is fully standard formula and rest allergy. If no symptoms are seen by then, you switch fully over to standard formula.
If she is still showing symptoms she may need an amino acid formula like neocate/puramino/alfamino. Nutramigen is still made from milk so babies can continue to react.
How much carobel are you adding? Ideally no more than 1.5 scoops in 5 ounces is what I was told by the Infant Feeding Team at Alder Hey.
She could also be reacting to the carobel as pp said which can happen and causes tummy discomfort.
Were you told to treat the oral thrush by a doctor? Was this formally diagnosed?
Do you pace feed? So feeding her upright not so she’s lying down. This way she can control the flow herself.
If a bottle aversion is present, as pp said the book by Rowena Bennett is very good. It explains how you offer a feed. If the baby stops drinking even after only an ounce you offer the feed again after 5-10 minutes but only once and that is it until next feed.
Is she still putting on weight? Wet and dirty nappies? If putting on weight don’t worry so much about the amount. My baby only ever drank 2-4 ounces at a time, 5 was a rarity even now at 9 months old. Some babies are little and often drinkers but they know how much they want to drink.
I would ask the GP for a referral to either an Infant Feeding Team, paediatric dietitian or paediatrician as soon as possible.
If your daughter does have cmpa you will need guidance in the future for weaning and also doing the milk ladder when older but first off they will help with these sorts of issues.

@Pizzaandsushi @LuckyMummy7 I did consider a feeding aversion and purchased/read the book! Baby is now on Alfamino so totally dairy free but it’s very grainy and the same issue was happening. Baby is now on tommee tippee variflow teats meaning she can have the drink as fast as she wants it and finishes her bottles now, although she will only drink half of it in my arms, the other half needs to be laid down somewhere 🫠🙄

to answer some of the above questions, it was my Gp who told me to introduce normal formula again and didn’t give any guidance as to how to do it. In hindsight I should have done some research but I just didn’t know any better I assumed I just trialled her back on regular formula. I’m currently waiting on a magic mix delivery from France today as I’m certain she is still reacting to something and I think it could be the carobel due to the soya links, her nappies are still totally full of mucus so fingers crossed that clears it up. Would love to go thickener free but Alfamino is just far too thin.

she hasn’t been weighed in a while but I can see she is growing, plenty of wet and dirty nappies also. Thanks all for your responses 💗

@Thompsc that’s not on you! That’s the GPs fault. They should have explained how to do the challenge.
So when my baby was switched to an amino acid formula we were originally put on puramino. He improved but something still wasn’t quite right and I mentioned this to our Infant Feeding Team. She said to us, they don’t know why but for some reason babies do better on one amino acid formula compared to another and we were then put on Neocate. After a transition period, all tummy discomfort and mucus nappies disappeared.
Puramino and Alfamino do contain soy oil. It’s highly refined so not supposed to cause issues but some parents like myself found these formulas just did not suit our babies. So maybe it’s worth trying a different amino acid in the future if things don’t settle.
We tried every thickener as neocate is super thin but unfortunately none worked and because he was no longer in pain (just lots of sick) we left it unthickened. Eventually when we started weaning and he began to sit up unaided all the reflux just disappeared.
Also do you use a Perfect Prep? We do but found it was terrible for producing bubbles and in those early months, this caused a lot of discomfort. The beauty of Neocate is that you add it to cooled boiled water so not boiling and therefore you can make a load of water beforehand and add formula afterwards when needed for lot less bubbles or still use Perfect Prep by putting in the hot then cold then adding formula and it again seems to make the milk less frothy.

@Pizzaandsushi My little one has mucus nappies after 34 days on neocate my heart is broke she has silent reflux aswell is this normal

@Eimz90 how old is your baby?
are you under any Infant Feeding Teams or Allergy teams? Sometimes there are other things babies can react to in these formulas, like coconut oil but I think it’s important, if you aren’t already, to speak to a professional. Get a referral from the GP for an Infant Feeding Team as they will be able to help you the most.
I would also add that some degree of reflux can be normal. Even on the correct formula which got rid of the tummy discomfort and skin symptoms, my baby still had reflux but wasn’t bothered by it. It took weaning and sitting up unaided at 6-7 months for the reflux to disappear

@Pizzaandsushi my gp referred me to a dietician yesterday my baby is 7 weeks and been on neocate 5 weeks with not much improvement. My first baby was similar and I just stuck with neocate because I thought this is as good as it’s going to get as drs seem to use it as the holy grail for allergies. Neither myself or my partner have allergies so it’s all unfamiliar territory. I honestly don’t even know if she has an allergy. Drs think mucus means allergy but I thought the mucus would have stopped by now. I asked the gp if the reflux could cause mucus and she didn’t think so. I really don’t want to be giving neocate and omeprazole as both aren’t as good for nutrition and it breaks my heart when you want to do the best for your baby

I’m so sorry you are going through this. My DD had terrible reflux, we were both constantly covered in sick, and she was also FULL of wind. We tried EVERYTHING, I was at my wits end and felt extremely isolated. No thickeners helped, they gave her dreadful tummy pain.

At 6.5 months, when she seemed to be struggling to move textured food around her mouth, and was still constantly sick despite sitting up unaided, I had her assessed for tongue tie again as it was niggling at me - 2xNHS assessments said no tie (bf was a nightmare so we were seen a few times) and a private lactation consultant also said no tie, although in hindsight she was too focussed on getting DD to latch regardless of how much it hurt me/distressed DD (if I had the energy to complain I would) BUT it turned out she was tongue tied after all 😞 she had a 70% posterior tie. It was snipped, and two weeks later she was eating anything and everything, drinking bottles properly and the sick stopped. I never thought I’d see the day. We used to go through five outfits every day, the washing machine was on constantly and I was always cleaning furniture and the floor. I never went out as I didn’t want to feed her away from home and I felt I couldn’t give her to anyone because she’d inevitably throw up on them.

It may be worth double-checking that your little one doesn’t have a tie. I hope things improve for you soon ❤️