Cow’s milk protein allergy - any light at the end of the tunnel?

[VillageFete]

Hi,

My son is 7 weeks old. Since birth (Formula fed) He has been full of excess wind from his bottom, sometimes it’s like a machine gun is going off He’s been unsettled and uncomfortable for a couple of weeks now. Sometimes pulling away from a feed, stomach making strange noises, lots of wind and a stuffy nose. Since last Friday he’s had lots and lots of mucusy dirty nappies, on average 5 a day and always 1 through the night.

Took him to GP on Wednesday who said he could have a bug so sent a stool sample off. He also queried a CMPA so changed his milk to Aptamil Pepti 1, he said trial it for 6 weeks and then reintroduce SMA and if there’s been an improvement on Aptamil and then a deterioration on SMA then a CMPA can be diagnosed.

Yesterday he developed a rash on his back and was very unsettled and not really taking his feeds. We took him to hospital to be checked over. Dr said to keep going with the new milk, chase the stool sample results up next week and he also said he’s teething! He said his gums are inflamed and he thinks this explains the snotty nose and some of the fussiness.

In your experience with your own kids, is it like to be a CMPA? I think so
I don’t know much about it yet but I keep reading horror stories. Can anyone tell me is there light at the end of the tunnel? If it is CMPA will he hopefully be able to tolerate some dairy products eventually? I feel sad that he may feel left out as a toddler at parties etc if there’s no suitable alternatives. I was really hoping he may have outgrown it before he starts nursery at 13 months old. Is that possible? Will I have help with weaning?

Anyone’s child have a CMPA and has outgrown it or can still tolerate some dairy at a young age?

@Chearaeteg Incredibly helpful and enlightening, thank you so much! I feel he has a non IGE CMPA based on what i’ve read. How long in your opinion should I keep him on pepti for before I take him back to GP if symptoms don’t improve? He’s been on it for 2 days so far.

OK so I have some experience of this. We had the Aptimel Pepti. We gave it about 3/4 weeks. Cows milk protein takes about a month to leave the system.

So it didn't work and we went back. We were put on Neocate which is even more stripped down that the AP. Worked amazingly well. Absolutely sorted him out. He thrived on it.

I think we just did dairy free yoghurt when weaning. We tried him on the milk ladder at 1 yr. Mild reaction. So we put it on hold for another few months and tried again. No reaction. By 18 months he had zero food intolerances.

Honestly weaning was fine. They eat so little at first anyway and you can avoid dairy pretty easily. It's not as if you're cooking them proper meals.

My twins both had IgE CMPA ( and egg too) They were bfed and tolerated me eating dairy so we didn't find out until weaning.

Weaning was fine. The first foods you offer is fruit, veg etc are df and you'll soon get used to adapting recipes to make them suitable.

Ds outgrew his allergies by about 5. Dd is now nearly 8 and and hasn't outgrown them at all.

But these were IgE allergies, whereas yours sound like non IgE and it's much more common to outgrow that sort I think.

It's so daunting when they're first diagnosed but there's loads of things they can eat. I don't feel that mine have missed out too much, though we've had occasional tears at birthday parties over cake etc. It's rare though and generally they were brilliant and managed their allergies themselves from about 3 onwards.

@ElspethFlashman Thanks for this. Good to hear your little one outgrew it by 18 months, really hoping mine does too. What kind of reaction did your child have? Also, what symptoms first led you to the GP? My son doesn’t have the eczema or any vomiting. Just wind, discomfort, lots of mucusy dirty nappies and a bit of a stuffy nose.

@Dauphinois Silly question, but how do I know if he’s allergic to soy/egg etc? Basically when I wean him i’ll find out I guess? It’s definitely daunting so thank you for the advice

DD was allergic to loads of things but at 2.5 has grown out of everything except milk and soya. We've tried the ladder several times but she failed each time until spring this year - we're now on step 2. The advice is not to try before they are 1 as them outgrowing the allergy is because the immune system matures - and apparently that's unlikely before age 1 so no point trying.

With weaning and finding out if they are allergic to anything else - the most likely baby food allergies are milk, soya, egg, wheat and nuts. I tried something of each about 3 days apart pretty much immediately on weaning - with a non ige allergy you need to leave it 3 days because it can be slow for a reaction to show. Keep a food and symptom diary so you can track back if you do start seeing symptoms as they can only appear after a child has the food repeatedly.

Foods I used to test were scrambled eggs, a bit of baguette (DD sucked on it rather than eating it), peanut butter spread on bread (and again sucked at rather than eaten) and hazelnut milk (alternative milk I happened to be using). I already knew soya was a problem from me trying it (bf) but you could try a soya yoghurt.

@VillageFete re how do you know if he's allergic to anything else, it was trial and error in our case. I know your ds is showing non IgE type symptoms but it might be worth having Piriton on hand when weaning in case you have any nasty surprises.

As mine had IgE allergies they were later backed up with a blood test but I don't think that's possible with non IgE, so trial and error or elimination / reintroduction is the only way.

Hello :)

My son is 10 years old and has CMPA and egg allergy. He used to also be allergic to soya, fish, almonds, peanuts, wheat but he grew out of those. Its not great obviously but there are so many vegan options these days that it gets easier to cater for him year by year!

My son used to have really severe reactions - swelling on lips, ears, fingers and hives, wheezing etc within minutes of ingesting milk. But now he just says he has a tickly mouth but no other obvious reactions. We carry an epipen but have never had to use it! He has asthma too - he's just an atopic type!

When weaning I basically gave him roast veg/ meat/ steamed green stuff to start with before doing bolognese, casseroles etc. Have a great vegan brownie recipe and banana cake recipe (only 4 ingredients - its lovely - especially with loads of lotus spread and soya custard :D) Happy to share if anyone wants it!

It gets easier to be catered for out and about too - places are becoming more and more vegan friendly. Fish and chips are quite often milk and egg free which is fab. As is heinz ketchup! Pizza express are great at making dairy free pizza and now do vegan carrot cake (very much appreciated as who wants a sorbet when everyone else is having cake?)

We are so on the ball with it now it's second nature to think about dairy free - but we still have lots of dairy in the house for the rest of us but generally always have an alternative so DS doesn't feel like he is missing out.

Happy to share any ideas for meals etc

All the best!

My son has CMPA but it wasnt diagnosed until her switched to solids (I breastfed, he was fine). He failed milk (and egg) trials massively in the first 2 years with whole body hives with just a drop on his skin.

He has now outgrown it completed at age 6. He still won't try actual milk (prefers soya) but he eats everything else (custard/cheese/yogurt etc.). Most of them do grow out if it in early childhood.

So mine had the same symptoms as yours. He's really rarely ever vomited in his entire life actually, stomach like iron! But from the stomach down it was a mess. Lots of lower gastric distress, lots of horrendous nappies and really acidic smelling, lots of green nappies, just lots of nighttime digestive discomfort. Mine was diagnosed at 9 weeks but of course it had been going on several weeks before that.

He also had ezcema and still has dry skin and we still use lots of Aveeno and only bathe him once a week and use a flannel in between.

He was v v snuffly and nasal and snored a lot but he has since had to have his adenoids removed as he developed sleep apnoea so tbh I don't know if that was connected or if it was anatomical. It could have been a coincidence.

Also a poster above reminded me that when weaning we did the 3 day thing. You introduce new foods no less than 3 days apart.
But as I said, it starts so small anyway that it's not actually a big deal. You're talking just licking teaspoons in the very beginning.

@Wren77 I'd love your vegan brownie recipe if you're happy to share

Hi OP,
Both my DD's had CMPA. Once diagnosed, DD1 was started on Neutramigen and DD2 was started on Aptamil Pepti. It became obvious before the four weeks were up that both formulas were not working as they ended up being covered head to toe in a rash, continued to vomit and have terrible bellies etc. Both ended up on Neocate an amino acid formula which worked and they thrived.
If your DS continues to have a rash and experiences digestive discomfort it's a pretty good indication that he'll need a more broken down formula.
In regards to the milk ladder, we didn't try this until about 12-18 months. DD1 has outgrown it now. We're about halfway up the milk ladder with DD2.
Honestly it becomes second nature after awhile when weaning. We use oat milk as our go to with DD2. When you start weaning they only have tiny amounts and we started off with soft fruits and vegetables.
I hope your DS feels better soon OP.

I wanted to say our nursery are v accommodating with DD2's allergies. She has soya yogurts, they do a dairy free and allergy free b day cake that all the children have on birthdays, they make a dairy free apple crumble, give her dairy free custard, jelly and vegan ice cream and I don't think she feels she misses out at all. Nurseries are very good at catering for children with allergies so I think your DS will be fine. Please don't worry about that.

DD had CMPA and also allergic to soya. First 6 months were awful, we were fobbed off and fobbed off. Once we were prescribed the right milk we finally had our happy baby.

DD outgrew the milk allergy by about 2 I think although she still can't have soya

@Dauphinois here you go...

170g self raising flour
2 tablespoons cocoa powder
170g caster sugar
5 tablespoons sunflower oil
250ml sweetened soya milk

Heat oven to gas mark 4/ 180
grease a 20cm square cake tin (I usually just line mine with baking parchment)
sift together flour, cocoa powder and sugar
In a separate bowl/ jug mix wet ingredients together
add wet to dry ingredients and mix
add a packet of dairy free orange chocolate buttons (asda's are the best) or just the non-orange ones if you prefer and mix in or put on the top when its in the baking tray
bake for 25ish mins
when its cooled sprinkle a bit of icing sugar on the top or drizzle some melted dairy free chocolate or do both!!

Can make a fab choc cake - I do this for birthdays or whenever I can be bothered or if I want the kids to tidy their rooms! Just double quantities and separate into 2 round baking trays
I mix pure spread/ cocoa powder and icing sugar for butter filling (not an exact recipe - just mix the 3 up until there's enough and it tastes nice!!)

Killer chocolate icing:

100g dairy free chocolate
1tbsp golden syrup
25g pure

melt choc
mix in syrup and butter so its all blended together
leave to cool
when its cooled to thick enough to spread on cake but not too thick it won't spread pour on top of cake put it on top of cake
chuck some choc buttons on!

Thank you @Wren77 - I'll give it a go

Look at the ingredients list of the formula you are using right now. It may have a lot of soy in it. In which case as he has started with a rash, he may be sensitive to soy as well as cows milk. If so, you will need to switch to a hydrolysed protein formula on prescription (all protein blocks are broken down (hydrolysed) so that the immune system doesnt recognise them and trigger.

At only a few weeks, his immune system is still covered somewhat by leftovers from being in your womb, so food intolerances and allergies sometimes take up to 4 months to become apparent.

My DS was on hydrolysed formula for a year he had 14 foods he couldn’t eat, now aged 12 there is one that will make him vomit and one that will give him hives and that is it. We dont even carry an epipen anymore.

Oh thank you everyone. Your advice is invaluable to me. We’ve had a rough 24 hours of him not completing feeds and fussing, plus his nappies are more mucusy and watery now. The formula is very thin. Could it be that?
He started the Aptamil on Thursday. How long should I give it before I go back and query the Neocate?

@SeaToSki I will take a look at the ingredients now, that’s a good point. The rash has actually gone now. It came about the morning after we started the milk but was gone by tea time? It’s all a bloody mystery to me

The GP should refer him to a dietician if they haven't already.

The allergy uk website has some useful info about CMPA. See also the NICE guidelines.

They do all outgrow it eventually, and in the meantime being dairy-free is tough but manageable.

@Daisychainsandglitter How old are your girls? How old was DD1 when she outgrew it? Thanks for the reassurance about nursery!

My eldest is nearly 5 and my youngest is 18 months. I don't think DD2 is as allergic as DD1 was but DD1 suffered for quite some time before the right formula was found. I was listened to much more seriously the second time around.
DD1 was around 3 and a half when she outgrew it completely.
In answer to your other question, I knew when the hydrolysed formulas weren't working within a couple of weeks of trying them as the rashes as well as the other symptoms continued to worsen.
When both DDs were put onto Neocate it was like a magic wand was waved and they were within a couple of days so much more comfortable and their rashes started to go.
Also, prescription formulas are very very thin. DD1 had terrible projectile vomiting and was prescribed a thickener called carobel which made it a more normal consistency. You will find that your DS's nappies do change but it may be the formula.... Neocate produced fishy very dark green nappies!
I hope you get it fixed soon. I found it a very stressful time OP.

@Daisychainsandglitter I’m actually in a terrible state today. The worry is horrendous. I feel so lost! This Aptamil is so thin and I noticed today when I lay him down he brought around half an oz up from the side of his mouth. He wasn’t crying or in pain but it panicked me. It looked just like water. Do you think this is reflux and I need to get him some Gaviscon/Ranitidine? Sometimes he pulls away from his feed and seems in pain. Wind or reflux? I just don’t know.