CMPA help

[SWJ90]

Looking for some advice as FTM and worrying about next steps.
Have posted previously about my now 6 week old little girl who struggles continuously with trapped wind/straining/writhing to poo. She also has mucusy poo, rash (which cleared up), blocked nose, poor sleep, fussiness at the breast.
HV suggested if could be a dairy intolerance so I cut for 1 week and then as she was refusing breast milk I had to top up with formula and so ended the streak. Saw little improvement.
HV suggested going again so I have done a further 2 weeks. At first I didn't see much change, her rash was clearing anyway, but this seemed the only improvement.
HV diagnosed colic and said to reintroduce diary gradually. As she had been really fussy on the breast (latches, pulls off, latches, pulls off - feeds take so long, almost an hour and a half), we decided go add in 1 formula feed (Aptamil Pepti 1 hypoallergenic) to give me a break and allow me time to pump to build up a supply for nighttime feeds when it's extremely hard.
She took this well and no concerns.
2 days later I reintroduced dairy - first day chocolate, no reaction. The following day I had a cup of tea with milk and a few tablespoons of cottage cheese on toast.
Today the rash has returned (small hives on face/eczema), her poos are super mucusy and she's been writhing and straining more.
I'm inclined to think this is dairy but could it be anything to do with the hypoallergenic formula?
My brother has a cmpa baby so we borrowed his formula to try for a few days.
I've been advised to go back to GP to get a prescription and dietician icsn referral but just worried it could be the formula somehow. I've already been 3 times as have been worried about her wheezing, rash and swollen eyes previously. They told me if she didn't have bloody stools it wasn't an allergy.
Any help appreciated!

Well the bloody stools is bollocks!

The fussy feeding could be a latch issue or because she is in pain. You ideally need to go dairy and soya free for 6 weeks. The formula you tried still have cmpa in it but just broken down, this is OK for some cmpa babies but not for others. At this age bf over night is essentail to build supply so if you want to introduce a bottle it’s better to be being the day. Lots of people give baby to partner after dinner and Mum can go to bed early and Dad can feed baby then while Mum rests.

also concerned about continuing to BF as my milk now has dairy in, and don't want to make her symptoms worse. would it be better to use formula for a couple of days until it's cleared from my system? Seems to be lots of conflicting info about how long it takes to clear.

Is it an option for you to try two weeks of just breastfeeding whilst cutting all dairy and soy (check every label!)? A lot of CMPA babies are allergic to soy too. It can be easier to manage a CMPA baby via breastfeeding than formula longer term.

Also, have you seen an IBCLC to check for tongue tie and latch issues? HV and midwives often miss these as it's a specialist job to diagnose them. It would be worth checking there are no issues there.

so is there any chance if could be the formula she is reacting to? I was thinking of pumping for 2-3 days and just trialling the formula with her to see if we notice a big improvement.
When shes feeding she is constantly writhing about and pulling her legs, straining etc. Wondering if swapping to formula just temporarily might see a noticeable diff but also worried about making it worse.

Yes, could be reacting to dairy formula or even just change from bf to fm as fm is very different.

we have seen a lactation consultant - she had a tongue tie which has been cut and her latch has improved a little bit. She seems to be learning still. On days where she is calm (not in distress from straining) she can latch fairly well. When she is unsettled because of her tummy she just forgets and can't do it properly. It's a vicious cycle.
irrespective of the latch, her rash has reappeared 2 days after me reintroducing dairy, 4 days after the Aptamil pepti. I am happy to go dairy free again but just wondered if we might see a huge change by just trialling the formula and it might give her a few days break 😭

Have you tried nipple shields when she's fussy? They can really help. Did you cut soy as well as CMPA? My CMPA baby continued to react to my milk until I was two weeks clear of milk and soy, which is quite common.

yes tried shields but felt like it was making her latch worse. Unsure whether 4 bottles of the hypoallergenic milk would cause her to come out in a rash and mucusy poos? Whilst 1-2 days after dairy she has a rash again and really unsettled.

I didn't cut soy as HV didn't advise to. I eat a lot of dairy so cutting soy as well is probably not a long term solution (though I will try) , hence wondering whether to try the formula but also now worried it's not the right one.

Hv know very little about cmpa

Hi, I’m a doctor who has had some pretty recent and up to date training on paediatric allergy. Firstly, the bloody stools comment is rubbish and a bit outdated. Symptoms can be really broad and certainly includes ones you’ve described. Secondly, it can take 2 weeks of complete elimination of something to be fully ‘gone’ in the body. Vice versa, when reintroducing something, it can take around 2 weeks before a ‘reaction’ or reoccurrence of symptoms is seen. True cows milk protein allergy is actually quite rare and often symptoms are severe (often include really poor weight gain, bloody stools (which is where some Drs get this from)). What you can do, by incorrectly removing cows milk protein from the diet (when there was no allergy in the first place) is actually cause a real CMPA as the body ‘forgets’ that it’s a safe food, so when it is encountered, your child reacts badly to it. I always say to my patients that you have to weigh up the pros vs cons for eliminating milk protein (which is found in a lot of things) as it is difficult to reintroduce and socially, puts the child and you in a difficult position (I see lots of parents saying that their child feels left out at parties, certain cooking activities etc at school, social events where food is involved, as a result). Other negatives include what I’ve said above about eliminating it when it wasn’t the cause of symptoms and then creating an allergy indirectly. However, if after a true elimination trial (which is eliminate for 2 weeks, symptoms disappear (not just improve), reintroduce and within that 2 week period the symptoms reoccur, then another elimination over 2 weeks causes symptoms to disappear again), if that occurs then you’re likely to be dealing with a true allergy. Given how difficult things are to reintroduce, I personally wouldn’t eliminate from my child unless they looked like they were in pain, not gaining weight, anaemic, bloody stools, screaming/crying a lot or also for the sake of your own mental health. A lot of these allergies do resolve with time by themselves and it’s about balancing what is right for you both at that time.

Sorry about the rant, allergy is unfortunately not simple which is why there’s so much misinformation and confusion. In your case, CMPA is certainly a possibility but I’d do a full and proper elimination first before coming to any conclusion. I also agree with what others have said regarding breastfeeding because if technique is incorrect or there’s a tongue tie etc, this will cause excess wind/gripe and could cause some of the symptoms described. It’s also important to note that less than 1% of the proteins (its proteins that cause allergy) you eat actually transfer into the breast milk, which is why real CMPA in exclusively breastfed babies is rare, as you need so much of it to usually causes any symptoms. Hope that helps and all makes sense!

Hello, thanks for the detailed reply! Very helpful.
I have done 2 weeks complete elimination - we felt her gripe seemed to.imrpove and less crying. Poos were still mucusy. Rash disappeared all together but unsure if that was happening anyway.
There is a clear return of the rash which makes me think it was either the EHF formula or response to dairy.
I would rather not create an allergy if there isn't one, could she simply have an intolerance? What would you suggest, continue to eat dairy and watch her symptoms?

Muscy is a sign of damage to the intestine so can take longer to clear up. I would be interested to know where 2 weeks elimation comes from as a few years ago no research had been conducted into how long elimation should be for.

My baby had CMPA. Eliminated dairy AND soy at 8 weeks and had to be extremely strict. Dairy accumulates in your system and theirs so a bit of chocolate here and there WILL eventually cause a reaction, seemingly out of nowhere.

It's not like other allergies where the reaction is instant. It inflames and damages the gut so the reaction is delayed.

Paedetrician (we live abroad) advised at the time that IF I wanted to go down this route, to be very strict for a minimum 6 weeks. He was a changed baby within a week. Night and day We re-introduced dairy at 4 months but failed (symptoms came back instantly) and then again at 6 months which was successful.

All this back and forth and introducing a new formula is not great. You really need to stick to it IF you truly believe there is an allergy.

Mine never had mucus or bloody stools. But he did have a rash, was clearly in a LOT of pain, crying lots for hours, extremely fussy during and after breastfeeding. Oh and horrible reflux.

CMPA refers to both allergy and intolerance. Intolerance = a type of allergy (if that makes any sense at all!). Reaction to EHF is a possibility but usually it’s more that EHF doesn’t fully eliminate symptoms, rather than reaction to the formula itself. Then next step is an amino acid formula (can get this from the GP) in that case. Little warning, amino acid formula tastes horrid so often you can’t switch fully to it at the beginning, you have to mix with the EHF and slowly adjust the EHF to AA ratio over time before little one takes the AA (unless you’re lucky and your little one doesn’t mind the taste!).

If I were you, I’d do another full 6 week trial of the cows milk elimination (2 weeks free, 2 weeks with, 2 weeks free again- symptoms should go away then come back, then go away again). I’d probably choose to fully breastfeed in the trial period, given your concern with the EHF. If you use EHF in that trial then it just muddies the water. Although using EHF in exclusively formula fed babies is the only option, which is why I don’t think it’s the EHF causing your little one’s symptoms.

If that doesn’t sort things/give you the reaction pattern you’d expect, you could speak to the GP to see if you can get some amino acid formula. The issue is is that the GP is unlikely to prescribe the AA formula unless there’s a CMPA so if symptoms don’t go away with the cows milk protein free trial, then they’ll likely suggest it’s another allergen causing the issue (such as soy or egg, the next two most common).

Again, hope that all makes sense! GP should be able to clarify things in person or on the phone. Writing/typing always makes it feel more complicated than it is!

Also want to say that if you’re keen to not create an allergy/intolerance then you’ll have to weigh up how upset/severe the symptoms are and how difficult it is for you to manage (mentally and physically). Most ‘grow out’ of the symptoms by 1 year or sooner but again, if baby is not gaining weight, screaming all the time and you’re feeling helpless then it’s worth excluding, particularly where you’ve said a trial without has improved things.