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

Thanks all. How can I go about getting her a proper allergy test? Sounds like a good plan to know what we are up against to be able to get a proper plan.

No, @nookierookie , I really appreciate any advice and thoughts, thank you. I am at the point where it feels like I’m told a new possibility each week and a new medicine to try. All I want is her not in pain 😩

Insist on a referral to a dietician.

You can be seen privately, but it’s not cheap. My eldest was seen privately and it cost about £1000. But it was 2020, the pandemic was at its peak, and I couldn’t get anyone to see us as to why my baby just screamed 24/7. So it was money well spent as within 48 hours of cutting out the right combo of allergens she was a different child

That’s such poor advice, some doctors are really no use with breastfeeding!!

poor latch can cause same symptoms as CMPA so I would get a second opinion from an IBCLC on the tongue and latch.

cut out dairy and soya, you might need to remove other allergens too.

the best thing to cure an inflamed gut is breastmilk - formula has a negative impact on gut health, if you remove the allergens then the best way to heal is to breastfeed.
might take a while for the symptoms to go, but the allergen proteins leave your milk within days.

I would also push for dietician and allergy testing. When you come to introducing solids at 6 months you will need help too.

@LuluHen
Don't give up you can have soya and dairy alternatives and then your baby will be fine I know a couple of people who have done this

(Side note - I hope the health professionals didn’t also tell you that BF babies don’t need to be winded… if they did IGNORE them! I only mention it as multiple people in my NCT were told this only three short years ago 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️)

My DD has cmpa along with other allergies. She was born on the 50th centole but lost alot of weight and tracked along between the 2nd and 9th for the first 3 months. I went dairy free at 8 weeks and there is a noticeable increase in her growth curve straight away. I continued to BF up until she was 10 months old when it was the right time for both of us to stop. By the time I had finished BFing she was above the 50th centile almost at 75th and was thriving.
Do not give up!! There is a great support group on a common social media site (not sure if MN rules allow us to name it) called CMPA main group support. Please join there, you will learn SO much and get so much support with this. You 100% don't need to give up and the health professional that told you that you do needs some serious re training

My son had awful reflux and we were advised to go dairy free to continue breastfeeding. We did it and I got to 10 months with him still feeding. Bourbon biscuits saved me (who knew they were dairy free!!)

Also agree with @MummaofWA bourbons are your new best friend!!

Hi there, I’m sorry to hear about your experiences it sounds very difficult. and I’m glad people have been able to give you so much advice to enable you to keep breastfeeding if you wish.

Mine is a different note - when my baby was born and before my milk came in ( v emergency section) he was offered donor milk- which I was incredibly grateful for as he couldn’t have formula due to a digestive issue. Eventually after things settled down I donated some of my milk too to a milk bank while feeding. Thought I’d just
highlight it as a ‘thing’ as I’d never heard of it before and obviously I know this is not the same a breastfeeding your own baby but was incredibly grateful to the kind women who had donated for my baby to use in his time of need.

My DD had an awful time in her first couple of weeks with tummy pain and vomiting, what worked for us was CoLactose (Boots version of Colief). She did drop a bit too much weight initially but our HV advised expressing and giving extra between feeds to mitigate it, had that not worked we would have had to top up with formula. Might be worth a try for you! DD is 18 months now and still loves her breastmilk.

When I went through this I was told it takes 6 weeks for cows milk to leave your system and breastmilk. I don't personally believe it but thought I'd mention it. Turned out he had tounge tie in the end

Don’t be hard on yourself. I know easier said than done.

Due to various meds I’ve needed to take I couldn’t bf. They are now healthy adults.

If you want to carry on as others have suggested push for allergy testing and in the meantime cut out all of the know allergens from your diet, google the names that they might be labelled as

Milk for example can also be in things like chewing gum, salad dressings, gravy and some deli and processed meats.

Just googled and it says 3 weeks so who knows. Sorry not helpful

My first born had a cow’s milk and egg allergy so I omitted them from my diet and was fine. Obviously it is hard work but not impossible especially as nowadays there are better alternatives out there. But it’s your choice don’t feel forced to give up. I would also get someone to check for tongue tie as it’s often missed on the nhs.

She needs to be allergy tested before she can be diagnosed with CMPA. Do the people who said she has CMPA know you cut out dairy at 2 days old? It's unlikely she would be reacting so badly to miniscule bits of hidden dairy you haven't spotted, so I think she must be allergic or intolerant to something else.

Ask them to refer her for the skin prick test for the eight most common allergens. Remember that allergies and intolerances are completely different things. Intolerances generally cause digestive symptoms whereas allergies will cause congestion, eczema etc, as well as sometimes causing digestive symptoms.
We have long family history of allergies, eczema and asthma and my son was diagnosed with egg, dairy, peanut and walnut allergies as a baby after developing bad eczema. I carried on breastfeeding but cut out those foods from my diet. He's now 5 and grew out of the dairy allergy at the age of 3.

One other thing to add is that Nutrimagen has a pretty strong flavour and some babies really don't like the taste, in which case you can try one of the other hypoallergenic milks (if you end up not breastfeeding, or supplementing).

Good luck OP, it's so awful seeing your little ones suffer.

I see you’ve had a lot of responses, I’m not sure if it’s been mentioned but new research shows dairy leaves your milk in 8 hours. It can however take up to 6 weeks for the gut to heal so you may see symptoms for a bit longer.
I would recommend joining the ‘Main Group - CMPA Support’ and breastfeeding offshoot group on Facebook. There’s a wealth of information there. A lot more than I’ve been given by any health professionals!
I also see allergy testing has been mentioned. Unfortunately the skin tests they do only test for immediate reaction. You’re probably dealing with a Non IGE reaction which is up to 72 hours after and comes from the gut. The only way to test is to cut dairy from your diet and hope things improve.

If you've not had dairy for 9 weeks then how can they say this is CMPA still?

It could be a whole range of things causing reflux not just CMPA.

Don't give up OP and don't stop breastfeeding if you don't want to.

DD was like this and was also on gaviscon then Omeprazole and diagnosed with CMPA because she was in so much pain, losing weight etc. Turns out she actually had a tongue tie that was causing all her reflux and nobody believed me. Worth having your DC checked for tongue tie again incase it's that (highly recommend Carmelle Gentle if you can get to London)

Get someone else to check for tongue tie - I asked for my DD to be checked again before I left hospital - they missed it twice! Got diagnosed, snipped, different baby!!

My son also had a milk and egg allergy and I breastfeed him to 18 months. He was referred to the allergy clinic at the children's hospital where they tested for multiple potential allergens. The dietitians at the clinic gave good, clear advice on both what to exclude from my diet, and on how to increase my calcium intake without milk. I still needed a calcium + vitamin D supplement which I got on prescription from the GP on the dietician's advice.

I understand that you really want to keep going with bf but if doctors looked at the pain the baby was in and made that decision, do you really want to ignore medical advice? You’ve ruled out tongue tie, cut dairy out as best you could but if you haven’t managed to completely do it (and that’s not a criticism because it’s very, very hard), do you think realistically you’re going to be able to cut out soy and all sorts of other potential allergens from your diet? Unless you can get an appointment for an allergy test/ see a lactation specialist very, very soon, if I was in your position I would just give the formula and if possible, pump and dump to try keep up my supply til I had figured out what to do with the diet etc.
I only say that because it sounds like the pain is so severe, plus the weight loss and the fact that it’s been 9 weeks at this point. If you continue bf, don’t give the formula and things get worse, what will you do then after you have ignored the drs advice? If they are not supporting you breastfeeding, unless you can get immediate professional help from someone else, you are in a very difficult position.
I’m sorry it’s not what you want to hear and I really hope everything works out for you. Good luck

Same thing with my little human. Realised over the course of about 6 weeks something wasn’t quite right, random screaming, constipation etc. After a couple of really weird huge vomits after I had eaten lots of dairy (and in hindsight nuts) I started to figure it out.

I cut out dairy, soya, nuts, eggs (briefly but not an issue for us) and mustard (took me while to figure this one out!) It took a few months of trial and error but ultimately for us it was worth it. Still breastfeeding at nearly 1&3/4… said when I was pregnant I wasn’t fussed about breastfeeding but I’d give it a go, then said 6 months. Can’t get him off the bloody things now!

It has never been officially diagnosed, it was noted that suspected it and that was pretty much it. GP/HV advice was always vague. i was told allergen tests aren’t that accurate and that there was no point. I had kind of figured it out by the time I properly spoke to them, and it was very much like “ah ok then.” I’m guessing how much info/experiencing depends on who you are talking to. As said by others a specialist would be ideal, although as long as baby gaining weight and not in too much distress you can figure it out on your own.

A mum I know has a terrible time bottle fed on docs advice for a few months and then returned to breastfeeding until her son was nearly two, not sure how common that is in terms of milk production!? Mix feeding could be a good compromise until you figure it out.

Another mum had a really bad time, her little one screamed, wouldn’t sleep AT ALL. They ended up spending hundreds on reiki and all other sorts of things… at 18months it clicked. Milk allergy. Kid is on oat milk now and catching all the ZZZ’s. And she feels terrible that she fed him milk for nearly two years whilst wondering why the heck he wouldn’t stop screaming!!

It is a minefield and a bit of a commitment. But not impossible! Ultimately for us it was the right thing. At first I felt TERRIBLE if I ate something accidentally, then I went through a phase of thinking I was mad and it was all in my head. I felt everyone (family etc. and to some extent GP/HV) was skeptical that what I was eating really had that much impact. I wondered whether I should just give up. And if I had that would of been fine too and I’d still have a happy, lovely little human. But I would of hated feeling that I didn’t have a choice.

You do what works for you and baby, alongside the advice of the professionals and whatever you choose it will be fine.

Things I wish i knew without having to figure out myself…

Tiny amounts can make a difference, a moment of weakness and two squares of galaxy set us right back for a few days.

May contain milk etc, rarely causes us any problems.

Soya lectins are fine, soya flour is fine, (For us) Soya anything else is as bad as milk.

Watch out for mayonnaise. We had the mayonnaise weeks where I started eating it as an alternative for EVERTHING, and he was upset and I was upset as I was SURE I wasn’t eating anything and I thought I had imagined the whole thing and nearly went to the doctor for formula and it turned out I had bought a different brand and was eating milk and mustard.

Coconut collaborative do amazing alternatives for dairy products. It will cost more. Elmlea plant cream is fab for creamy sauces etc. Catherdral city plant cheese is the closet I’ve found to the real thing.

Basically oats and coconuts saved my meals.

Also, baby massage (rainbows across their tummy’s, google it) worked wonders for us when he was struggling. I could feel the “bubbles” in his tummy and would massage them to his left side and he would instantly relax. And/or fart.

Sorry for the REALLY long post… I could go on forever 🙈but I wish I had known these things when I started! Good luck with it all and don’t be too hard on yourself whatever happens!

Everything is ok, you can continue if you have the correct team around you. 3 of my little ones had this, one with multiple allergies and I controlled my own diet with an nhs allergy dietetic and consultant. My last baby is celiac and if it wouldn't of been for me breastfeeding it would of never been picked up so early. It's all about slow elimination of your own diet but maintaining yourself with it.

I haven't read any of the other comments on this feed but I wanted to send some support and push to find or get the advise of a dietetic and don't feel pressured to stop. There are some tremendous allergy support networks out there who can assist you with this and have information online, I am sure people have directed you to this already.

There is a tonne of research out there around your own gut health that may have impacted on crossing the placenta in pregnancy, antibotics can cause this and then this gives the issue you are finding with your little one in the early days. It can correct itself in some situations in the little one dependent if its an allergy or intolerance, not all.

In positivity all of my babies with great help from an allergy dietetic resolved this and grew out of it by 2 to 3, one was anaphylactic to dairy and egg in the early years ... my last one I fed for 2 years with a whole host of intolerances and with the most horrendous side affects until food groups were eliminated by a dietician. I had tremendous support but I had experience and I had to really push for it to get heard (2020 birth) .. regardless your little one needs to be referred into allergy paediatrics, they are tremendous and would be so upset to learn someone has guided you to stop the breastfeeding.

I was also going to say this. There is no test for CMPA. It’s a list of symptoms that can basically apply to any baby at many stages so it’s very hard to properly diagnose and massively over diagnosed in BF infants. I don’t want to derail that thread though. If your baby is allergic as in IgE (the type that can cause anaphylactic shock) that’s what they would test in a skin prick but your baby won’t react though breastmilk so until you start solids you won’t need allergy testing, and even then all you can really do is try a little bit of each food and watch. Also lots of IgE allergy’s don’t show themselves until later, and the child can have several exposures before a reaction. I have a child with severe IgE allergy who was breastfed with no change to my diet. The consultant told me there is so much about allergy they don’t understand.

Also get a proper tongue tie assessment from a practitioner who specialises in it. Hospitals miss it all the time so unless you’ve had a 2nd opinion don’t rule it out. And the vomiting blood. Are you sure it wasn’t blood from your nipples? I only say this as my friend recently rushed her baby to the doctors for vomiting blood and it was actually just blood from her sore nipples she’d swallowed!

You can breastfeed OP. Look at cmpa main group on Facebook and there's a breastfeeding page for you too. Youu have to cut all things milk out of your diet (Google all the derivatives) and it'll take about 6 weeks for you and baby to be totally free from milk in your system then she should feel better. If she doesn't soya can be the next allergy but join the cmpa group and there's lots of parents who offer advice and support x