Been told I can no longer breastfeed

[LuluHen]

Hi, very new to MN, just wanted some advice and to talk to anyone else who has been through similar. Sorry for the long post…
DD is 9 weeks now, ever since day dot she has been really struggling with pain (arching back and knees up screaming!!!) for hours on end throughout the day and vomiting constantly. Finally she was diagnosed with reflux and we were given Gaviscon at the hospital. This wasn’t effective and she began losing weight so she is now on Omeprazole.
After many trips to HVs, Midwives and doctors due to little improvement, today we have been told she has cows milk protein allergy and I was told I have to stop breastfeeding her there and then and we were sent off with prescription hypoallergenic formula. I left there and burst into tears. I am devastated. I worked so hard on getting it right, persevered through bleeding nipples and pain and finally began to enjoy it. I am not ready to give up. Of course I don’t want her in pain if that’s what’s causing it, but I feel so sad that it’s so sudden and I haven’t had the chance to prepare. Am I being stupid and selfish for feeling this way?
Also, how the hell do I just stop feeding!? My boobs are going to explode by morning!! I was given no advice. Feeling a little helpless right now…..
Thanks in advance x

@LuluHen have you tried baby probiotics? My DD was VERY windy, colicky and has reflux. Giving her probiotics gave her massive relief

You could try giving Lactase Drops by Colief before each feed, OP. I think you mix it in a teaspoon with some expressed milk before feeding as normal.

I believe Nutramigen still contains soya. We had to have neocate or Alfamino for it to work ( I mix fed both kids.)
nutramigen works well for some kids but not necessarily all, so just a word of warning.

Oh, and odd things contain milk proteins - some wine and beers do for example. And lactose free is not the same as dairy free although a lot of people think that it is!

It was 15 years ago for me but you do have to check everything. I got caught out by salt and vinegar crisps, ham and tomato ketchup all having milk in! Oh, and teething powders. Look for whey and casein as well as actual milk.

I fed my cmpa baby until he was 3 1/2! There is a really helpful Facebook group, but I also read things from la leche league and spoke to a lactation consultant through the NHS. It does not need to be the end of your journey if you don't want it to be!

(By the way, this will be controversial on this thread because the prevailing view is to keep bf, and I am not saying you shouldn't because no baby is the same as another but we went to see Dr Neil Shah at the Portland Hospital and in our scenario he advised me to quit bf, which is why I made a push towards bottle feeding amino acid formula around 4 months and eventually succeeded at 5. His view was that my son's gut was struggling and very inflamed - he said that the white blood cells in breastmilk can be an irritant for a very small number of babies with an already very inflamed gut because they are foreign cells - usually, the presence of mum's cells is very good for baby of course - and he thought that we were one of those cases, given that I had tried a food diary in addition to no soy or dairy without success. I'm not telling you this as advice, but because it is actually a very complicated area and there isn't a one size fits all solution.).

If baby is still reacting also cut out soy. The proteins are quite similar and lots of babies react to both. Also other mammal milks like goat/sheep (eg in feta).

Do not give colief it's not dairy free. Probiotics are worth a try, biogaia drops are not cultured on dairy so safe to use. Agree with PP to get checked for tongue tie.

If she's literally screaming in pain is it worth trying to continue because it's what you'd prefer?
This isn't meant to be arsey at all, so please don't take it that way. If you've already cut out dairy, and she's inconsolably screaming in pain to the point they've said this needs to stop, I would be inclined to listen to the health professional, rather than anyone here who is not qualified.

Are you sure it's dairy? DD is sensitive to dairy and I cut it out whilst breastfeeding but after a lot of trial and error we worked out she was in fact reacting much more to the gluten in my breastmilk. In the end I cut out dairy and gluten whilst feeding her.

Lactase drops can help with a reaction to lactose but not with CMPA.

Both mine have cmpa still! I’m still feeding the second and was supported hugely by the hospital to keep bf.
You need to cut out all dairy and all soya. The slightest trace of dairy or soya can affect them. If you are really unlucky (like I was with my first) it’s eggs as well.
Your baby should have a referral to a dietitian who will be able to point you in the right direction diet wise. There should be regular follow up with the dietitian especially around weaning.

If they have a really inflamed gut from the dairy or soya then it can take a few weeks for that to settle down and for them to do better. This was pointed out to me by one of the doctors treating my second.

I did top both of mine up with neocate. After a breast feed for a few weeks to get the weight back up. I was given an exact feeding program and had to give 30mls (second child it was 25mls) after a bf. They should give you the special cups as well for feeding so you don’t have to introduce a bottle.

The milk you have been prescribed does contain soya and is not the most broken down milk. Neocate is the milk which has the cows milk proteins broken down into tiny tiny pieces.

Im now breastfeeding my second baby with CMPA. Both children have been allergic to both dairy and soya and screamed in pain until I’d cut out all traces of both. Once I’d done that, they were like different children.

We got a referral to an allergist and I also had to cut soy, celery, nuts, eggs, strawberries and something else I have forgotten. I was able to add most things back in, but all forms of dairy and soy were off limits the whole time.

Oh yes and neocate is the formula we used - it's Coconut based and doesn't even contain the broken down dairy proteins.

There’s a really helpful Facebook group “Main group - CMPA Support”, and a breastfeeding specific offshoot of that one.

Id agree with what others have suggested - check everything you eat, milk/cheese has to be listed as it’s a key allergen. Cut out soy as well - this is where it starts to get hard, sorry! As a lot of milk free stuff has soy in.

To give context, nutramigen is “extensively hydrolysed” - basically it’s made from cows milk but treated so that it shouldn’t trigger an allergy. But many babies do react to it, and then have to be moved to an amino acid formula like Neocate, basically one entirely lab made. So to suggest that the allergy is so severe that you have to stop breastfeeding, yet only use the first line allergy formula is contradictory.

Read up on CMPA and you’ll quickly find you know more than most of the medical professionals you come across.

I'm sorry you are going through this.

DD1 had CMPA and I successfully breastfed for 2.5y. I went 100% dairy free myself. She was also allergic to egg so I cut that out too once we discovered that.

Your DD needs to get allergy testing. If they are just guessing it is CMPA this could backfire. One of my friends was told to stop BF due to suspected CMPA. It turned out her DS had both CMPA and soya allergy, not having breastfeeding as an option made things much harder.

On the upside, once we both cut out cows milk DD was much more content, it was a huge change for her.

Wow I’m so overwhelmed with this support-thank you all!
I’m sorry if I’ve not answered everyone directly.
So, to try to respond to all the questions, DD vomited blood which was how we got the hospital visit and Gaviscon initially. Prior to that she had Optibac probiotic drops and I was taking tablets. We even went to a cranial
osteopath. I was willing to try anything.
DD was checked for tongue tie. She is a nightmare latcher though! She loves to nipple feed little monster! I resorted to nipple shields a lot whilst I healed. In terms of a bottle, as I’ve expressed a fair bit for partner to feed she is happy to take a bottle. Giving her the formula this evening has been so upsetting. I’ve cried at the thought of the night feed.
Great advice about the soya though, I had no idea about that.

Sorry you've been given some really misleading advice. Cows milk protein allergy is definitely not "very rare" and it doesn't mean you can't breastfeed, as long as you cut out dairy from your own diet.

However if your baby is still having symptoms despite you cutting out dairy then CMPA seems unlikely. Why do they suspect CMPA? As far as I know they don't test for allergies at that age so are they just guessing?

I'm not sure what the answer is sorry, or whether Nutramigen might solve your problems! I hope things improve soon

You can totally breastfeed, you just need to cut all dairy out of your diet and ask for allergy testing in case there are other allergens.

I breasted mine until after she was two. She had histamine type reactions to dairy, soy, eggs and some fruits. As soon as I cut them out of my diet she was fine.

Make sure you are taking a calcium and vit d supplement if you are giving up dairy and know that when you do eventually reintroduce dairy into your own diet, you will need to do so slowly.

Good luck!

Oh I feel so badly for you and outraged that it has taken them NINE WEEKS to diagnose dairy allergy!!! I can’t believe the system just continues to let women down on this whole front and then the health service/government wrong hands over UK BF rates. It makes me SO angry.

So, please don’t take too much notice of their (apparently) incompetent advice - listen to other posters here with lacto free diets and babies happily breastfeeding. A friend of mine had this issue (I had different BF troubles). She had to cut all dairy for a few days to work it out of her system, but was then able to breastfeed no problem. Pump and dump while you’re clearing anything and let her have the lactose free formula while that’s happening then go back to BF.

If she’s happy taking a bottle then I’d highly recommend continuing to pump daily so you build up a freezer store and can share the feeding burden a little bit as time goes on. Take ZERO notice of anyone telling you that if she has a bottle she will never BF again - it’s absolutely untrue.

Highly recommend this book by Clare Byam Cook to have on hand during your BF journey. She also used to do private consults and solved my issues in one swoop (despite GP/HV/ lactation consultants at leading hospital being unable to do so).

www.amazon.co.uk/What-Expect-When-Youre-Breastfeeding/dp/0091906962

After the nightmare I had with my first I took zero shit from health professionals on this front - male GP telling me I didn’t have thrush and, if I did he would only prescribe OINTMENT?!?!?! 😡😡
I am prepared to bet my experience on this front trumps your MD, mate.

it really shouldn’t be this much of a fight - I’m so sorry

Wrong hands?? Ooops - wrings hands is what I meant

I see you've had lots of good advice but another person here to say if it's cmpa you need to cut the soya too, which unfortunately means you probably can no longer have the dairy free alternatives!

I’m so so angry that you’ve been given such awful advice. Do not stop breastfeeding. That would be absolutely ridiculous, especially as you’ve been following a DF diet anyway. I honestly can’t believe they would tell you to stop breastfeeding.
www.breastfeedingnetwork.org.uk/cows-milk-protein-allergy-cmpa-and-breastfeeding/
have a read of this whole article. Good luck and please don’t stop. It also risky for you for developing mastitis. I would actually be tempted to put in a complaint about the treatment you’ve received.

Also agree with other posters - my friends baby had other allergies as well avocado I’m pretty sure and a whole list. He was allergy tested (US based family). Also there is dairy hiding in some things you wouldn’t first realise - I’ll ask her about it as I remember being quite shocked at the amount of things she had to cut to get rid of dairy.