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

My ds2 had cmpa too. I just had to cut out all dairy and soy products and he was a different child by day 3. We fed until he was 18 months.

Some of this info isn't right. It's not true there is no test for CMPA, although I don't think it's usual to test young babies for it. In older babies and children, skin prick tests and blood tests are used.

An IgE-mediated allergy to cows milk protein absolutely can be triggered via breastfeeding, although isn't always as you found yourself.

You're definitely right though that there's a lot about allergies that isn't understood 🙂

Sorry, I meant there is only skin prick test for IgE allergy. The CMPA that most babies are being diagnosed with is not an IgE allergy though. I was told by several specialists that babies don’t really react to IgE allergy through breastmilk (obviously they would never rule out the possibility as it’s little understood) because there is not enough of the allergen that gets through. If they did babies would be having anaphylactic reactions to breastmilk all the time considering how common IgE allergy is now. It really is trace amounts of what a mother eats that gets through breastmilk. Studies on composition (not that there are that many) have concluded this. Which is why many clinicians, researchers and charities are becoming alarmed at how many b/fed infants are being diagnosed and prescribed specialist formulas. As I said it’s a conversation for another thread as it won’t help the op.

Morning all, sorry if I’ve not replied to everyone but will try to answer as many as I can.
@samqueens- yes! I have been told that by so many professionals, who looked at me with pity for claiming she is really windy…… she definitely does need winding for ages!
Thanks for the recommendations for Facebook, I don’t have social media anymore (I work in education and it was too much hassle with students/parents that I came off it) so can’t access those groups. I am likely getting just as much support with this thread anyway!
So she has now had 2 formula feeds, she must be due another any time now but she’s sleeping so I’m leaving her. I’m not used to formula fed baby going longer between feeds.
All I want is for DD to feel better and not be in pain so I’m going to give the formula a try (as I have done with every other suggestion/supplement/medication we’ve tried)!
I’ve expressed my milk and am freezing it, just in case this makes no difference and I can go back to BF her……it could happen.
I’ve also had a quick Google at milk donation at banks but there doesn’t seem to be anything near me. I will keep looking into it as an option as I do have a good supply.
Doctor wants to review next week to see how the formula is working. I feel as though I’ve been fobbed off so many times already so will persevere as she said DD will need to go back to the paediatrician if there is no improvement. It’s been super stressful and demoralising to keep telling people she is in pain and suffering to keep being told ‘babies cry’ and ‘she just has an immature gut she will grow out of it’. DD is not my first so I know her excessive crying and vomiting isn’t normal but I certainly feel clueless right now with this situation.
Tongue tie has been ruled out. I’ve consulted doctors, midwives , HVs and lactation consultant who all said she doesn’t have one. She is a fussy latcher though and my flow is very fast so lots of gulping. I thought at first it must just be that but it’s extreme and she will literally scream and turn purple just to pass wind. She burps well but is really sicky up to 2 hours after feeding so not standard wind/colic.
With regard to the vomiting blood, my first thought was my nipple but it didn’t seem to be that at all. I had suffered with bleeding nipples earlier on but we got through that so I have no idea what caused it. Hospital just diagnosed reflux, prescribed the Gaviscon and sent us on our way. When I went to GP as Gaviscon was not particularly effective and causing constipation (more bloody problems just to counteract the other 😩!!) it was noticed she has an umbilical hernia. Apparently this will be operated on at 12 months. That has definitely got worse as well. Poor little lady, I just feel she has had such a rough start and I’m desperate to give her some relief.
I’ll see how she gets on today with the formula to see if there’s any difference, but I guess it won’t be that quick to show.

@User98866

Agreed that there is so much that we don't know. And IGE non-IGE accords with my experience too - my friend had to go dairy free for her non IGE baby (who outgrew issues at 1) and was fine BF her IGE daughter who was clearly dairy allergic once weaning and is still dairy free at nearly 2.

I would caution a bit on the idea that non-IGE are necessarily massively over diagnosed. My dad has quite serious psoriasis and was put on hormones to assist his growth pre teen. He was also left in his pram in the garden to cry a lot as a baby. It's perfectly possible that actually he had issues that would be treated differently now, and that dietary issues would be thought about.

His sister, my aunt, had a second child who was wheezy, asthmatic, eczema, you name it until he outgrew it around 8ish. He also didn't sleep at night at all until he was 7. Neurotypical but very unsettled. She found that a grass fed diet - no soya- improved things (cousin was fine on dairy, but only grass fed, aunt thought it was soya feed that was an issue) but was rubbished by health professionals whenever she talked about it 30 years ago.

My son had all the non IGE hallmarks and terrible cradle cap. He is still prone to a bit of eczema but is tolerating dairy much better and is growing well, though a bit small (25th centile compared to his sister on 90th) Keeping an eye on his growth, but otherwise fine.

My point being that different generations treated these different "allergy"/"unsettled" babies differently (Matthew perry's mother apparently gave her baby who always cried barbiturates....). I'm not sure which is correct at all, or even whether it is dairy related necessarily.

Doctors, midwife , HVs and a lactation consultant also said my DD didn't have a tongue tie, wasn't until I took her to see a private tongue tie practitioner where it was diagnosed and cut at almost 1 and breastfeeding improved that day, no more being in pain after every feed, it was like having a different child.

Really worth getting them assessed again by a tongue tie practitioner. A health visitor isn't qualified to diagnose tongue tie, mine dismissed it for ages.

Just to clear up something in the thread: if a child has an IGE allergy it is possible that they will be affected by breast milk. Mine can't tolerate my milk if I've eaten eggs - she gets unhappy and develops eczema. Weirdly, she is fine when I eat her other allergens.

The HV advised me to go to the lactation consultant as a professional' who would know about tongue tie. They checked and said no. Now I'm really confused and worried it could be that. I don't really know where to turn. How do I find a specialist near me. I thought the lactation consultant was a specialist......
Just to update, I know it is early days but the milk has so far made absolutely no difference to her. I've tried to continue expressing as well but it doesn't feel the same and I am still getting so engorged and I swear my supply is now affected! It's miserable. I know I was probably living in cloud cuckoo land but as much I was desperate to be able to continue BF I started to hope this milk would help her and we would see a difference. I just want her out of pain!
Sorry, it's late and I'm frustrated and tired so lacking patience with this formula. Feeling so helpless now.

Join the Facebook group - ‘Infant tongue tie U.K. support group for parents and health professionals’ is how my sister found someone after nhs kept telling her her dc did not have it.

I don't have Facebook.

Was the lactation consultant an IBCLC? There is a website to find tongue tie practitioners - www.tongue-tie.org.uk/find-a-practitioner/

Yes maybe it will be worth joining for groups like this? I only use my fb account for groups, they have been valuable after people have mentioned certain ones on mumsnet. You can lock your account down I work in education too and nobody ever tries to add me as my profile is very low key as I have it only for that purpose.

www.thetonguetiecentre.org

This is who I saw (Carmelle Gentle) she runs a pay what you can afford clinic if you can't afford to go private. She's in London, was totally worth the travel for me. She's incredible.

There's also Faye www.rockabyehub.co.uk who specialises in tongue tie and reflux and she is the person to go to if you live in the North.

Thank you @MrNook I will have a look at her website.
I suppose I could consider Facebook @magma32 but I'm just not keen on rejoining tbh. Thank you though

www.vegansociety.com/resources/nutrition-and-health/life-stages/pregnancy-and-breastfeeding

Some good hints on here obviously you aren't vegan but they recommend various non-dairy alternatives