Breastfed - milk protein allergy

[LouiseKira]

I can't believe the difference in my 8 week old since I've finally found out the cause of all her problems. She's allergic to milk protein.
Her symptoms -

• Poo consistency of water since birth
• Bad reflux, very distressed. Sometimes vomiting other times you hear her swallow it back down and start screaming
• constant spitting up
• couldn't put her down. At all. Just unsettled and very very unhappy at all times of the day. Times when she would sit and you could interact with her calmly were incredibly rare, and ended with her screaming again.
• spots on face which I just thought was baby acne and didn't link the symptoms. They then turned into a scaly rash that was obviously itchy as she kept rubbing her face.
• snuffly breathing that sometimes terrified me that she couldn't breathe properly!
• terrible sleep. Took hours to settle at night, and usually only fell asleep out of exhaustion.

I am EBF, and don't eat that much dairy, some days without, but others would binge on chocolate. This explained why some days she wasn't too bad but others she was terrible. 4 days ago I randomly had loads of ice cream and she was the worst she's ever been!

We've now done 3 days with out me consuming dairy. I cannot believe rhe difference. I finally have a happy baby. She will sit and I can interact with her for more than 30 seconds. The rash has gone. No more screaming uncontrollably. Poo is more slushy. She sleeps! She naps! Yesterday morning I sat with her on my knees for 15 minutes as she gurgled away.

I'm so happy I could cry.

I wonder if cmpa is more common than people think?

Oh bless her! Glad she is feeling better

Happy for you. Our little one seems okay with cheese, however I can't touch chocolate or ice cream. She gets awful reflux and is generally unhappy. Makes me sad that nhs advice is keep eating it until they get used to it. Why would I intentionally make my baby unhappy?
I can't eat gluten so I'm used to having to cut things out.

Enjoy your happy little one!!

Is that NHS advice? That's shocking! Surely it's better to wait for their digestive system to mature? I obviously don't want DD to have a lifelong allergy, but from what I've read you introduce it gradually later on and they grow out if it by the first year. There's no way I'm eating dairy right now with how unwell she was!

I initially thought it was colic, but infacol made her projectile vomit. Spoke to a chemist who advised Gaviscon which helped the reflux a bit but this was just masking the problem. I then thought it might be overfeeding as she would take the breast constantly (But pooing and weeing constantly so no problem with supply)

Looking back, the constant feeding was probably 1 - reflux hurts and drinking helped ease it. 2 - comfort! She was in digestive pain. 3 - considering her body was reacting to an allergy, she probably wasn't digesting properly and getting enough nutrients?

The difference in her really is night and day.

There's obviously different levels of reaction to the protein. I've read that babies who are EBF, it is rare for this to happen. I just if it's just undiagnosed/ misdiagnosed.

It is more common than you realize. I had to stop eating eggs and milk for two years as I was breastfeeding my now 7 year old. He was allergic to dairy and eggs, tested at 6 months. He can have pizza but we're still working on the egg ladder. He had reflux, eczema, crying and couldn't be put down.
Glad your baby is better now.

My ds is allergic to dairy/eggs/wheat and many others. While breast feeding, I had to be on very restricted diet, avoiding everything he was allergic to. I breast fed up until he was 21 months old . That was very hard, but worth it.

My dd was the same, she's nearly 16 months and still can't tolerate it, I've given up with the milk ladder.

Some stock pots contain milk as do crisps, packet sauces, gravy granules, etc. Avoid soya too as the protein is similar so check your bread for milk/soya too.

Read the labels for everything and then read them again to double check.

Sestras 16 months is way too early for the milk ladder. We had allergy tests from 18 months until 3 years before we started the milk ladder. We started when he was 3 years old with tiny pieces of digestive biscuit and worked our way up. It took us two years to get to pizza and four years later he can have a tiny bit of dairy ice cream without major issues, just a bit of itchy throat.
We have t started eggs properly as he broke his arm at the start of the year and when he got better Covid started. He is still under the care of the pediatric allergy team and due to speak with the allergist in two weeks as can't go into hospital.
It was tough but is getting better. He stopped breastfeeding at 2.5 years before I could go back to eating dairy and eggs after stopping when he was 11 weeks old.
We are an atopic family as I suffer from hayfever and his dad suffers from eczema with allergies running through both our families. My second has no allergies thankfully.

Not sure if I mentioned that my child is now 7 years old.

I’m pleased for you op. We really struggled to get my baby properly diagnosed even though her older brother also had CMPA when he was a baby. She has it much more severely and I was driven mad by all the health professionals telling me it was vanishingly rare. Anecdotally, I know 3 babies in my social circle who have it too, so it must be more common than they say. I fed her up til 13 months and tbh though we did see an improvement in that time, she was still a very unhappy baby, very grizzly and never wanting to be put down. I stopped feeding last month as my mental health was taking a real bashing and I needed to go on medication that wasn’t compatible with breastfeeding. The change in her is extraordinary, so much so that I think she must have been reacting to something other than dairy through my milk. She’s finally happy, and sleeping through for the first time ever. The biggest difference is that she’ll sit on my lap now, which she just wouldn’t do before. I’m happy for you that you’ve not had to wait as long as I did to get to this better place

My cousins baby had this and it took months for them to work out what was wrong too, as baby was putting on weight still. She had to give up breastfeeding and was put onto a prescription only powdered milk which used to stink! I believe later on there is a milk called A2 or with the A2 removed (sorry, don't know the details), but by then, she'd already got used to soya and other milk alternatives.

She is now a happy, healthy 5yr old and can tolerate small amounts of regular milk.

Correct Elouera, there's Neocate which is completely hydrolysed milk protein and nutramigen. Very stinky especially neocate, thankfully we never needed it as by the time I considered it he was a year old and there was no point as he was old and would not take it due to the stench so never tried. Neocate is almost €50 for 500g and not covered by health insurance while the other is around €20.

I've not spoken to my gp about this yet. I'm due to go next week for DD's vaccinations and I'm worried they're just going to dismiss me. Not that it would change anything, I am 100 percent certain with the massive change in her that she has a dairy allergy. But obviously it would be nice to get some help when I try and introduce dairy at a late stage? Will it matter if I do this without my gp's help?

I'm currently avoiding all allergy triggers out of precaution and watching her like a hawk. I had eggs yesterday and she seems fine so that's one to definitely cross off. In a couple of days I will have peanuts.

I may be being overcautious but I just can't have my baby in so much pain and stress again!

If you can get referred to allergy specialist from gp, that will make so much difference. Once you are under the allergy specialist, you may get specialist nurse(s) and dietitian(s) as well as consultant(s) to take care of your dc. All the re-introduction of allergen(food challenges) was done at the hospital.