CMPA or over worrying ftm?

[SWJ90]

Hi all, am acutely aware that I'm a FTM and overthinking everything with my baby. Desperately trying not to self diagnose or assume the worst, however It would be nice to hear others experiences. She is 4 weeks old and we have had so much conflicting advice from HV, GP, midwife, lactation consultant etc.

Symptoms:
Rash on face - this was all over her face last week has cleared up a lot but there's still a big section on her cheek which looks more like eczema - see pic)
Extreme gassiness - straining/writhing to point of crying several times a day and waking up at night
Sleep refusal - particularly at night, but also sometimes in day. Very long wake windows usually 2 hours min.
Mucusy poo - stringy and watery
General fussiness - seems to be distressed most of the time, very rarely relaxed (maybe one wake window of the day).
Constant hunger cues
Fussiness when feeding - pulling on and off breast and bottle, screaming to latch on but then crying when on as if she's unhappy (doesn't do this as much on bottle)
Stuffy nose
Sneezy (5/6 times a day - could be normal?)

I totally appreciate most of these things are normal newborn behaviours. However our HV suggested the rash, mucus poo and fussiness at breast could be an allergy. I am doing dairy free now (day 4) but don't know if I'm being ridiculous.

Main issue is I am struggling with BF, we have had difficulty feeding since birth due to poor latch and her clamping down on nipples. She had a missed tongue tie which has now been cut but haven't seen much change in her feeding yet.
We were previously topping up with 1 formula feed but can no longer do this due to dairy. I am finding it really hard to EBF as my nipples are so raw and every feed is like a battle - she screams and rages at the breast and it's really difficult to get her on. When she is on, she is really fussy and constantly pulls on and off.

Wondering whether I need to continue dairy free because it's a lot at the moment.

thanks for any help!

I think a lot of your issues here are due to the latch. She's getting frustrating, taking in a load of air, then being uncomfortable and wanting boob for comfort and so the cycle continues. It could be cmpa, but for now I'd not worry about your diet and focus on the latch. Are you able to afford a IBCLC consultant? Or are their some local breastfeeding support groups around? Otherwise the La Leche group has really good advice and telephone lines. Sorry your having a hard time, a poor latch is horrible! It does also sound like she's got a cold, which could explain a lot of the grumpiness and snuffling too.

thank you! I have thought the same thing. I paid to see a lactation consultant privately - she showed me an exageratted latch technique which I've been using, though it still hurts. She suggested she had a tongue tie, which was causing the pain. We took her for an assessment and they confirmed this (seemingly missed several times on the nhs?) so she had this cut a couple of days ago.
However her feeding since hasn't really improved. I know it's early days and it may take time for her to relearn, but I'm unsure about how much longer I can take the stressfulness of it all. I feel like I've been battling for a month and as desperate as I am for it to work, I don't know if it will. Have bought a spectra pump so I can still give her breast milk.
There are times when she seems to latch on really well, but then ninety percent of the time it's still painful and I can't continually take her off and it just creates more and more anger.

Should also add she has reflux too but again I know this is fairly normal!

The problem is that even when she latches well, your nipples are damaged at the moment. I'm sure you already are, but try to let them get plenty of air. People tend to recommend keeping them moist in breast milk with silver cups but for me I just found that made the skin soft and easier to damage. As it's only been a couple of days I'd try to get your initial latch as good as possible (the temptation is to rush when she'sad and wants a feed, but if you bring her close and her mouth isn't wide enough abort at that point and try again rather than seeing if it works) and if it's an acceptable latch I'd try to do the entire feed off one boob to let the other one get a break. Then use the other boob next time. You'll be wonky but this is what worked for me.

I'm sorry you are going through this, it's very difficult. It sounds very like my daughter when she was that age, several doctors/lactation consultants told me it was normal/gas etc until her nappies eventually got worse and there was blood. I cut dairy and soy (as its similar to dairy proteins) and there was a huge improvement. She was diagnosed with CMPA and I ended up being dairy and soy free for over a year which was really hard but my daughters symptoms went away. She's now 19 months and we are both fully back on dairy😊 she also had a tongue tie which we got cut, and reflux-- a specialist told me that while some reflux is normal it can also point to CMPA.

I guess my very long-winded point is it could very well be CMPA, or it might not. Could you cut dairy and soy for 4 weeks and see if it helps, then reintroduce dairy and see if the symptoms reappear? That is usually how they confirm diagnosis. There is a podcast called "bowel sounds" (terrible name😂) with Dr Victoria Martin, it was very good and really puts CMPA in context I would recommend listening to it.

Good luck to you and your baby, it will get better xx

This one is tricky. A lot of what you describe could very much be latch. Newborn acne is common at this stage and clears up quickly, is the rash on her face or body?

CMPA is of course possible but it is very overdiagnosed in cases where bad latch is causing issues.

After a tongue tie division it takes at least 2 weeks for the tongue to gain full movement and this also relies on you really doing your part by working on latch, unfortunately lots of mums are led to believe that the snip is all that's needed and everything will be fine.

I would suggest seeing a lactation consultant (IBCLC) before anything else, or at the very least seeking out specialist breastfeeding support - not a MW or HV.

DS had a tongue tie cut and the consultant gave us exercises to do with his tongue after, to make sure it didn't reattach. They were simple, you basically put your finger in their mouth so they move their tongue sideways to touch it. Might be worth asking about. Otherwise I'd suggest some skin to skin time, or a bath together, to hopefully help calm her if she's feeling uncomfortable.

Oh you poor poor thing, that is so tough. Unfortunately to discard cmpa you will have to stay dairy free for at least a month, and probably soya too (most cmpa babies react to soya).

With the latch, remember to check every time that the lower lip is properly everted, this was the biggest thing that made a difference with both my shockingly bad feeders. And lanolin on the nipples helps a lot too.

Reflux is often associated with cmpa or another allergy, so there are quite a few indicators that this might be it.

You have had lots of good advice on the latch and CMPA, so I will just echo the advice on lanolin for your nipples and to consider trying one side at a feed. If she does get a good latch, then you can make the most of it, and it will give the other side a longer break. Both of mine virtually always fed on only one side for months.

The longer wake windows could be related to discomfort, or it could just be her. Neither of mine read the wake window part of the manual and always had longer wake windows.