CMPA/reflux/wind? HELP!!

[Lhh25]

I am in need of help as I am totally out of options 😭

Since around 3 weeks old my baby who is is now 5 weeks old has been taking first 2oz of her bottle, stopping herself therefore I burp her, then when trying to continue the feed she begins to get really upset and screams. It appears she is still hungry however and will take the teat back in her mouth but then after a gulp or two screams again and it’s a fight every feed. She always takes the first 2oz with ease and also to note that she has no problems during the night with this (sleeps well, has 3/4oz without issue and goes back down no problems) it’s only during the day 🤔. We had always given her Hipp Organic.

We thought maybe wind and wonder if it still could be as she is very windy, constantly farting and can hear bubbling in her tummy while she sleeps. Therefore we started off trying infacol which didn’t have a huge affect and have used gripe water during the day at times and it has helped a lot but then I find not using it for a few feeds makes her fractious.

I have been to my GP as I suspected silent reflux originally as I can hear stomach contents coming up and her swallowing them but mostly when I can hear it she doesn’t seem in distress (unsure if this means it’s likely not silent reflux.) Originally for the reflux all they said was feed her little and often (unhelpful advice). I tried this with no difference of course.

They then said that maybe it’s CMPA and prescribed aptamil pepti 1 for us to try. It hasn’t made any difference to her fussiness yet and we are 4 full days in. Also starting day 3 her poos have changed from yellow to dark mustard and there’s noticeably a LOT of mucus in it. Her poo and farts also ABSOLUTELY STINK! They are also a lot more runny than they have ever been and for a formula fed baby. Is this normal? She also doesn’t have huge obvious symptoms of CMPA. She does have a rash that the GP said is likely not related and the fussiness of course but that’s about it.

So now I’m worried it wasn’t CMPA before and now she’s reacting to new formula. My gut tells me it’s maybe wind and I should go back to Hipp organic and continue with using gripe water occasionally but GPs have been extremely unhelpful. I’ve also been to get her tongue tie released, to an osteopath and use Colief.

Anyone who has had a similar situation that can offer advice on what to do, what is wrong would be so so appreciated as we have totally ran out of options. TIA x

You have to stick with the aptamil pepti 1 for 2 weeks. If she has got CMPA it takes 2 weeks for her body to recovery and they'll continue with symptoms until all the dairy is out of their system and the inflammation that has built in their stomach has calmed. My baby had the same and after about 10 full days I started to see some improvement, after 2 weeks she was clear of all symptoms.

As hard as it is, stick to the 2 weeks before swapping again/getting a second opinion.

Aptamil pepti 1 poos are green and disgusting, it says on the tin/website this is normal. Again 4 days isn't long enough. Aptamil pepti 1 is very very gentle, and very easily digestible.

Stop with the gripe water and colief. Just let the aptamil do its thing.

If no difference after 14days then by all means proceed to explore other issues. But if your baby is allergic to dairy the absolute worst thing you could do is now give her Hipp and not follow the 2 week instruction. You'll likely end up in A&E with a full blown allergic reaction.

It sounds to me like she has CMPA. It just takes time for the body to settle. My baby didn't have obvious symptoms until she started pooping liquid blood which was terrifying....the mucus is stomach inflammation and common in CMPA and occurred for us during the time she was healing.

I say all this as a Mum who went through the exact same thing (recently), made all the mistakes and wound up in A&E with my baby twice. Don't be me!

It does take 2 weeks on Aptamil pepti for symptoms to resolve. Once I had that hammered into my head by an A&E doctor i saw the difference.

Even if it's not cmpa the aptamil pepti 1 won't harm your baby in any way, so stick with it.

Thank you so much for your reply. This helps a lot, I will definitely continue for the minimum 2 weeks to see if there’s changes 🤞🏻 do you mind me asking what your LO’s symptoms were?

Gassy and wind. Frequent spit up. Reflux. Crying spells. Lots and lots of hiccuping. Ive never known such a hiccupy baby. Also very hungry. Constant pooing and then days of constipation. But honestly nothing that really stood out as major red flag. Some rashes but mild, a rash under her chin where milk had dribbled and across her chest but nothing awful looking. She alternated between constipation and very loose nappies. She would strain too. Health visitors and midwives during those early weeks would just say - ahhh that's normal, and you can try colief etc. She also sounded bunged up and snuffly alot, especially during and after feeding.

It was only when my baby had full blown symptoms with blood in her nappy that it was obvious.

P.s by the time it reached blood in her nappy stage (6 weeks old) it felt like a medical emergency (i.e rush to A&E) and she then developed a prolapse (7 weeks) - the inside of her bum was on the outside as she had blood filled diarrhoea. When I say 'felt like' I was almost hysterical, it was the A&E doctors who were reassuring me she didn't need an MRI scan and that it was just CMPA. I had never even heard of that previously - I obviously assumed she was gravely ill and needed surgery or something!

Reading your post it feels like you've had solid medical advice and you're being taken seriously. I knew something was up but at her 6 week check up (just the morning of when she really went downhill) our GP told us all fine.

I spoke to 4 different midwives, a health visitor, 1 GP telephone apt, 1 f2f GP appointment, 1 walk-in-apt GP, and a conversation with 101 - where I noted the wind/gassiness/fussiness/snuffliness etc and said something wasn't right. Everytime I was sent away with suggestions of changing formula, trying colief, trying infacol etc and I was sort of given a 'awwww first time Mum' spiel. Everyone wanted to make out I was a clueless first time mother and this was normal baby wind (the amount of people with egg on their face was phenomenal!). Not a single one of these people suggested CMPA as a possibility.

In my badger notes a midwife has written - possible silent reflux, have told Mother to give colief and keep baby propped up after feeds. And other comments like - mother has struggled through a difficult night and is worrying, have reassured that wind is normal....(so patronising when I read it back now). I have 2 degrees but was treated like a moron!

The A&E doctors were amazing though.

I'd never heard of CMPA and by the time we got to A&E type level, I found it hard to believe what I was being told and thought I was being fobbed off again. I then didn't know about how my breastmilk was also affecting her (like I say I cut out obvious dairy but I didn't know e.g the slice of toast I was having in a morning also contained powdered milk!). Which added another week to my babies suffering with the prolapse then developing from the constant straining and upset tummy.

I don't know that your baby absolutely has CMPA but 2 weeks on the aptamil pepti 1 does sound like your GP is taking it and you very seriously and exploring all possibilities and starting you on a solid treatment plan. Aptamil pepti 1 is about £40-50 per larger tin in cost to the NHS and your baby will be on it for 18mths at around 2-3large tins per month. They don't prescribe it lightly.

If after 2 weeks she still has symptoms then they can try another formula - 'neocrate' or they may try medication for reflux.

Fingers crossed you find the solution with the aptamil pepti 1.

Top tip, stock up on it. Keep tins back and be on top of picking up your repeat prescription and keeping surplus tins away in a cupboard. There has been supply issues and I've been dangerously close to almost running out a couple of times with no way of getting more. Dh has had to drive around for hours to find a chemist who has one in the back. You can buy it but only 1 or 2 small tins at a time from behind the counter, and it's so expensive, but when the supply issues hit we called 10 chemists who didn't have any left.

Sorry this is so long! Haha. But hope it's helpful.

Oh wow, it sounds like you have had a terrible time of it. Especially with HCP, there is nothing more frustrating when being fobbed off or assuming that it’s because you’re a first time mum is why you’re having these fears - have been through it recently also. But it sounds like the GP has been good with us which is great.

The symptoms you’re describing are exactly the same as what my baby is experiencing so I feel much more secure in our current plan and that it might actually be CMPA. Your replies have been invaluable, it’s a shame HCP don’t have this same knowledge apart from when it’s so bad you need to go to A&E 😣. Thank you again appreciate it so much!

How are you getting on? Any improvement since the Saturday?xx

Hey! Yes definitely a change, her skin is much better and a lot less fussy with feeding. Still fusses but nowhere near as bad as it was.

Did your LO have mucousy poo while getting used to the formula? Thank you for checking in x

Yep she did, can't remember how long it went on for. It was a bit ad hoc for a while. But it should definitely have cleared up within the 2 weeks.

So glad to hear she's seeming better. Hppefully by the end of the week the mucus stops. Fingers crossed for you!

my little boy (now 15 weeks) was very similar. Very very windy which would lead to him screaming in pain all the time, had a rash I had one GP tell me was acne even though it covered his face and neck horribly and would flare up after every feed and would alternate between explosive, frequent poos and taking ages to poo, straining it out which usually resulted in milk coming back up too.
he has a suspected milk allergy and we were initially put on the hypoallergenic formula Nutramigen 1. For the first couple of weeks everything got so much better until symptoms started returning and now we’re on a completely synthetic amino acid formula. He is much much better! Still windy (likely from omeprazole he’s on for reflux as I’ve been told by the hospital it makes them extra windy) but feeds are easier than they ever were. His rash has completely disappeared and his poos are 1-2 a day without any forceful explosions. So maybe speak to the doctors about moving on to the next stage of milk for CMPA.
we’ve had to fight every single week since he was born to get GPs to listen to us and it’s only been the past month now we’re under the infant feeding team at Alder Hey hospital that things are progressing, so I completely understood waiting the 2-3 weeks to see how this formula goes is torture but you will get there and once you’ve been on the pepti formula awhile you’ll have at least given it a good go and if things aren’t improved then that to me feels like it should be enough evidence to the doctors to try something else.

Just to add the aptamil formula you were given does have milk in it! I only realised when I looked at the ingredient list…

Sorry to jump in. We are currently going through this also.
My son is 9wk old on Friday. The pepti cleared up some symptoms. Still has rash though.
The thinness of it was causing spit up to the extent his bottle seemed to be coming back.
The gp added carobel. So been using that.

After review by consultant they added gaviscon. Two days in he has been sick when it's added. Again bottle coming back the temperature was hot. Now his constipation cries have started. I consulted the pharmacy who recommended reducing gaviscon to two feeds a day and book in with gp in a couple of days. Our GPS don't work Fridays so plan is to go Monday.

I'm thinking of trying gripe water to reverse effect of constipation side effects. He has his vaccination later today which I expect will throw things awry.

He has been on pepti for 2 weeks.

We have a further consultant review in a fortnight.

It's extensively hydrolysed which means the proteins are broken down. It contains milk but the protein in the milk have been broken down so much they don't cause the allergic reaction (at least in the vast majority of CMPA cases).

If a baby can tolerate the hydrolysed version they are best on this formula - it makes it much more likely that they will be able to grow out of their allergy altogether.

In some cases like @Pizzaandsushi it's necessary to go to the synthetic, especially if symptoms start to worsen after 3 weeks of being on the hydrolysed version.

We're about to start the milk ladder and I'm all manner of nervous!