CMPA . Goats milk?

[Gingernut1989]

At a complete loss. Baby with cmpa ebf. Has anyone tried goats milk for their cmpa baby ?Last time he had formula he couldn't breathe so called 999 and off to hospital. When I hadnt eliminated dairy he was poorly. Foam like poos , constant reflux , nasal congestion, tummy ache, hives , crying constantly. I was told how incredibly rare it was for breastfed babies to have cmpa and that I wouldnt need to eliminate dairy. So I believed the professionals that he is fine. tried him with formula and he was struggling to breathe.
I didnt want to breastfeed this baby . It wasnt my maternal choice . I only did it because he was in nicu and poorly off the formula in his NG tube so I said I would feed him myself briefly. Breastfeeding has always been easy for me but my last baby wouldnt stop until almost 3years old and it put me off wanting to again.
He wolfed down normal formula but was poorly immediately. Was told to use omeprazole for the reflux , eliminate dairy and no more bottles. Since then he has THRIVED. But I really wanted to get him off the breast at least so I can enjoy nice food at Xmas.
Prescription formula he will not take. We are now trying neocate after others and he hates it. I tried vanilla essence , banana nesquik , strawberries blended in was another recommendation from health visitor. He just gags on it .
I know milk protein in other mammals is supposedly similar but has ANYONE found goats milk worked ?

I mean goats milk formula obviously *

It’s still got the protein so I wouldn’t. How old is he now? I was the same as you but at Easter, DESPERATE to eat normal chocolate! So I did and I couldn’t see a reaction but it had been at least 6 months since I’d had it in my diet.

I was told goats milk protein and cows milk protein are very similar so not to do that I’m afraid

If a true allergy, I wouldn’t risk a young child’s health. Cross-reactivity due to similarity between cow and goat milk protein is possible. It may be worthwhile trying a soy-based formula, although sometimes this can also be problematic too.

What age is he?
I know soya isn't recommended under 6 months but if he wont take the prescription stuff it might be worth a try

EBF baby with dairy allergy here. Paedetrician advised that the dairy protein in breastmilk is already partly broken down and if he reacts to that, he will react to goats milk and to not touch it.

However, your child's health is more important than some butter at Christmas surely? I ended up breastfeeding for far longer than intended so I get it. But studies show breastfeeding can help babies get over their dairy allergy more quickly. And the dairy free formula is thinner and often causes reflux and other issues. So you might be changing one problem for another.

I get it. I do. I was the same last year. I also had to give up soy which meant i couldn't have a single takeaway, restaurant meal or pastry because soy is in everything. It was painful. But you get over it.

Edited as I see you have tried dairy free formula.

Over 50% of babies who are allergic to dairy, are also allergic to soy because the proteins are so similar. They no longer recommend soy based formula.

He is allergic to soy also I forgot to mention. & I have been crying to be honest it isnt just a little bit of butter at christmas its that my whole choice was to formula feed and now I am here. I understand I just have to suck it up. The (male) consultant said the same thing "this is the sacrifice we make as parents" so yeah I guess this is it

I had quite a few breakdowns over it, the soy thing really threw me too. Please don't think I don't understand. I felt so incredibly trapped.

However, once I re-framed it as doing the best for my son and that there just isn't an acceptable alternative, I was fine again. I took formula off the table as an option. Stopped trying with the stupid vanilla essence.

When people asked me how long I'd be BF, I told them he's allergic to dairy and BM is best for him so will be doing it for a long time. No pussy footing, no politically correct "formula is fine too" (as there is A LOT of social pressure now to not breastfeed and to be sensitive because some women are offended etc).

I felt better at that point because I felt I was taking control.

And one other thing- most people don't take the dairy free diet seriously. My DH, my FIL and several aunties cooked stuff in butter for Christmas and I only found out once my baby was sick all of a sudden. They all said surely a bit of butter will be fine. It was horrible. So be careful who you trust to cook for you.

I am dairy free having bf two CMPA children for the last 6 years. Goats milk will not work I’m afraid. You can still have nice food at Christmas being dairy free - for a few short years breastfeeding for the best thing for your child’s health Is not the end of the world, I promise!

Food & drink recommendations :
Oatly oat milk or for larger quantities overheard oat milk powder is great. I mix it up in a small jar and keep it in the fridge.
I love Naturli vegan block, made with Shea butter and really creamy and rich. Don’t buy the spreadable version it’s twice the price.
in Tesco find the Pret vegan frozen bake at home croissants, again made with Shea butter they are delicious baked in the oven for a treat for breakfast.
the Waitrose vegan or free from mince pies are lovely, Tesco do some good free form ones too.
Hotel chocolate do amazing nutmilk chocolate that is delicious, NoMo chocolate in Tesco or Sainsbury’s is nice too.
You may need to spend time reading ingredients, but there are ready meal versions of most things you can have, or free from versions if not available in the standard ready meal sections.
for currys we use coconut milk and Patrick’s spice paste to make up a dairy free version easily, most of the starters in the ready meal supermarket sections are ok and in particular Thai or Chinese take away packs in supermarkets are usually dairy free.

you can do it, I don’t find I miss things like cheese now as I know I can’t have it, and almost everything else you can get dairy free versions of. Booja Booja vegan caramel pecan ice cream is also a favourite of mine. Best of luck!

It's just us for christmas dinner so no worries in that department. Yeah I have had a few comments like "just give him a bottle" and "if hes hungry enough he will drink it" but he really really doesn't like it .
A friend of mine (who formula fed her children) sent me a video last night during a breakdown I was having. It was all about how amazing breastmilk is and how it alters when baby is sick or when they are dehydrated. Just to tell me I was doing ok and it wasn't forever. But yeah when you are in the thick of it its hard.

I think mainly because I wanted so badly to formula feed this time after breastfeeding the others well into toddlerhood and the toll it took on me when I had to wean them and they were more aware of what was going on. He is only 4 months old so wouldn't really notice.

I just need to keep going I know. I arent going to try the neocate anymore cos we both end up crying.

Ah I feel for you OP. You are doing an amazing thing and it’s definitely best nutritionally for your son with his allergies. But BF is so tying.

However: it really doesn’t have to be 3 years like last time. You just need to get him to a point where he is ok on food and non dairy drinks. Maybe with a supplement. So that might be 1 yr? And if you find BF easy, maybe you are a super milk producer and you’d find pumping quite easy, especially if you could borrow/rent a hospital grade pump. You could free yourself up a fair bit that way especially if you can build up a freezer stock.

If he’s that seriously allergic that he can’t breathe on formula, then I would suspect goat will be a no go. Some people who are intolerant of cow are ok with goat but it tends to be if they have a milder reaction to cow.

@FamilyStrifeIsHard2Bear I actually like oatly and I will probably always have it in my hot drinks now even when back on dairy. I will look out for the other recommendations. My nearest supermarket is asda and their ready meals if dairy free have soya. Its so hard to find foods with neither. When im cooking for everyone I have just swapped out butter for dairy free spread. We have managed to make normal meals cottage pie , chicken casserole etc without much change. But if I order the kids a milkshake for a treat I end up so jealous !

How old is he? Sorry if I’ve missed it but that will change things re. how long you’ll likely need to breastfeed for and what the best advice is. You mention he was EBF but sounds like he had some formula in NICU - a single feed in first 72 hours of life is highest risk I thought? (Might be wrong, formula companies muddy the water)

There is a relatively new rice based formula for CMPA called Arize. I'm not sure how it compares to the cows milk based ones in terms of taste, but it's worth a try. Goats milk has a similar protein structure to cows milk so lots of children still react.

It's rare for a breast fed baby to react to cows milk protein through breast milk, but if they do it's usually because they have had cows milk formula prior to reacting (which it sounds like your lo had) AND also that they have a severe allergy (which it also sounds like your little one has)
Does your little one have an IgE or a non-IgE allergy? Non-IgE is the more common form.

@minipie I am going to see if I can get a pump off local fb group or if they rent them out or anything. Its a good idea. I am going to the health visitor walk in on friday to ask. That is a good idea

Just missed the other replies. Yes he had formula in nicu . IV fluids only for first few days and then 20ml formula which he was sick . I took 5ml colostrum up to the ward and they gave 2ml then 2ml then 1ml 3 hours apart. The next day he was off ventilator and on just cpap. They tried formula again he was sick and sats dropping so tried another brand. I said I wanted to breastfeed for a little while because he was so poorly and the paediatrician said he would need top ups but one of the nurses was like "I do not want that baby in that bay there having anymore formula" she was quite a bossy older lady and the baby doctor allowed him to have just breastmilk but he put a time on it of 48 hours if he hadnt gained weight he would have to have top ups. I tried formula again once we had been home a while & thats when we ended up calling ambulance.

As several people have said, goats milk formula isn’t a good idea, especially as he’s reacted so severely to cows milk formula. If he won’t take the prescription formula, then you are kinda stuck between a rock and a hard place. How severe is his reaction to CMP if you’ve eaten dairy? If you can’t get away with eating some then you can’t really express build a stash so you can eat dairy as it takes 2-3 weeks to clear your system. You can express and give yourself some breathing space, so you don’t feel quite so overwhelmed.

The good news is that there are lots and lots of vegan versions of Christmas treats, so you can stay dairy free without really missing out on much.

If you don’t want to bf for 3 years again you can start weaning after 12 months or so, it doesn’t have to be all or nothing.

Thanks everyone. I understand i can wean at 12 months i just find it harder. My eldest was around 15 months but he self weaned. I found it hard to say no to my daughter once shes walking and talking it was more of a battle . I think I will just cross the bridge when i get there and aim for 12 months. Its as I explained in my original post when I have eaten dairy : congested, foam poos, constant crying, tummy ache, rattly chest , rash etc. It seems like such a long time away but then I guess it does fly by and I dont want to wish his babyhood away. It just feels like thats what im doing.

Weaning at 1 isn’t like weaning a 2 or 3 year old, they can’t ask at that age. I did it twice at 1 yr preparing for going back to work after maternity and I don’t remember it being particularly difficult, of course that’s just my experience but I can see how a 2/3 year old would be harder. Anyway just to give you hope it may not be that hard especially if he takes to food well.

@minipie this fills me with hope!