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?

Both my children had cmpa

Ds could tolerate the pepti formula, it does still contain the milk protein but they are broke down into much smaller particles and easier to digest

Dd couldn't tolerate the pepti and needed to see a paediatrician and got a prescription for one called neonate which doesn't contain any

Ds was able to tolerate milk by 2, dd took until she was 3.5

I found it much easier than I expected, feel free to pm me when your thinking about weaning and I can help with some food ideas

One thing our paediatrician said was to also change onto dr browns bottles and they did seem to help

Both formulas seemed almost greasy and we struggled to get the bottles and teats properly cleaned but switching to fairy platinum washing liquid which was much better than the normal

Both of the suffered from sickness, reflux, tummies kept gurgling and didn't put much weight on until they changed formulas

Dd has this, severe eczema and projectile vomiting when she had anything with milk. I breast fed until she was one, and then we swapped to oat milk. It was a bit of a nuisance working out her diet to exclude milk, but was manageable.
She is nearly nine now. She can tolerate dairy to some extent, so small amounts of butter, small amounts of chocolate, cake or anything where the dairy has been cooked, she seems to manage, although if she has too much chocolate her eczema breaks out on her arms and legs. We still avoid raw dairy, so not sure how she would cope. It looks like she is gradually growing out of it, I’m hoping by the time she is an adult, she will be able to cope with dairy moderately if she chooses to, although it may always be a sensitivity. You get used to it, it’s not really a hassle anymore. I remember how stressful it was when she was little though, you have my sympathy.

We were referred to a dietician when dd was 1 as she was dropping percentiles for her weight

I would ask for a paediatrician referral though as they can prescribe different looks, refer to dieticians, offer help with weaning

Both of mine had the skin prick tests from 18 months for milk allergy but were negative as it was an intolerance than they grew out of rather than a true allergy

You'll be asked to try the milk ladder usually every 6 months when you wean to see if they are able to tolerate some dairy. If you google it you'll find all the info but you basically start of with a tiny bit of biscuit with dairy in and work your way up over a number of weeks to see if your child can tolerate any

It feels really daunting but once you get your head round it all it's not that bad. There's plenty of free from things available now and even things like party rings & Oreos are dairy free for when they are older

Looks =milks!

Thanks for the replies. Really helpful.

See, he hasn’t been vomiting at all and he went from 8lb to 10lb 6oz on the SMA? But this was before the frequent dirty nappies started last week. I am hoping if he does have it then it could be a milder case?

Would I be able to start the milk ladder during the weaning process? Or not until he’s older?

I was bf and had to cut dairy and soya out of my diet. Three dc. Dc1 wasn't diagnosed until nearly a year - she was fine with soya, was eating normally by about 4, but still not keen on milk as a drink or yoghurt. Dc2 was diagnosed at a month or two, much worse than dc1, no milk, no soya and also reacted to loads of other foods - wheat, potatoes etc. By about 2 1/2 we had successfully introduced some baked cheese (after a few aborted attempts), she was eating fairly normally by 5/6, but still won't drink milk, eat yoghurt and prefers sorbet to ice cream. In secondary school now, we stopped monitoring her food when around 3, the remaining dietary restrictions are self- imposed. Final dc was probably the worst, blood in nappies if I had milk. By 3 was eating anything and everything quite happily. So it seems to vary widely but for my 3 any restrictions beyond pre school were more through choice/ preference and did not need monitoring.

Milk ladder isn't usually until they are 1 as it isn't soft food

I think it does sound mild which would probably mean he'd be ok on dairy by the time he's 2

It's really common and all nurseries will be used to preparing dairy free foods

My ds wasn’t disagnosed until 15 months old despite me knowing something was wrong from 4 weeks. He had 6-7 explosive poos per day plus very extreme reflux. I want to the gp so many times to be told it wasn’t CMPA because he was gaining weight nicely and slept through the night.

It all came to a head when I switched him to cows milk from formula at 1yr. He became so poorly and lost so much weight, he was finally diagnosed. Still not grown out of it at 3.6.

I’m so stressed about managing summer and holidays this year, he is no longer fobbed off with an ice lolly when everyone else has an ice cream from the van!

Dd1 had cmpa, severe reflux and was just a really unsettled colicky baby. Would cry for hours at night. I self diagnosed her and cut out dairy from my diet as I was bf. Finally got a referral to the paediatric dietician when she was about 9 months old, by which time I'd unconsciously started on the milk ladder as we'd weaned by then. By the time she was 2 she was able to take full dairy and has had no issues since then. There is light at the end of the tunnel. Shes now 5.5 and has no issue with dairy at all.

DD2 was diagnosed at about 6 weeks. We were sent to A&E by the GP after I changed her nappy and it contained blood and mucus. We spent a day there having tests to rule out anything really serious and the dr concluded that she had CMPA. I was breastfeeding so had to cut all dairy out of my diet (no fun just before Christmas), and like you I did wonder what the future would hold for her and imagined her as a toddler not understanding why she couldn't eat what everyone was eating and having to take her own food to parties. Her symptoms were quite severe when she diagnosed with the blood in her nappy, she was unsettled, full of wind, wouldn't sleep, cried all the time, had a rash that the GP had said was something else and put her on antibiotics for, but she is now 4 years old and can eat everything, loves cheese, rarely drinks anything but milk and is very healthy. I slowly introduced bits of dairy to her diet when she was about 1 after googling the milk ladder. We should have had a referral to a dietician to help with that but never got an appointment. So, there is a possibility that it will all turn out ok. Also, my DH has recently turned vegan, and I am discovering that the dairy-free options for almost everything are a million times better than they were 4 years ago, so it might not be so bad to have a dairy-free child.

Thanks all for the kind replies.

If it definitely is CMPA, should I not introduce dairy at all when I wean him until he’s about 1 then? I would have thought I could try him with a little bit of yoghurt or little bits of cheese to see how he goes around 8 months?

No blood in nappies but they are mucusy. Also no vomiting/reflux. His symptoms are basically excess wind, lots of dirty nappies, unsettled, bit of a rash on his back, stuffy nose and sounds a bit chesty. He’s rather difficult at times too Quite the crier!

My DD has CMPA. She is 8 months so early days yet. She still cannot have any cows milk products whatsoever without breaking out in eczema all over and having horrific digestive problems.

Weaning wise it hasn't been much of an issue it just means a little more care and effort. She eats all fruit and veg, meat and fish. I have found a wonderful range of goats milk products that she adores. Her favourite is banana goats yoghurt! She has been 80th percentile consistently since birth so it hasn't slowed her down!

I do worry sometimes I will have to stop her having chocolate etc when she is older and it makes me a bit sad but I will just have to find alternatives for her . I know there will be children with far more restrictive dietary requirements so I try and remind myself that she is lucky in some ways.

I'm going through this at the moment with my one year old. We didn't realise that she had an allergy until we started weaning as she was exclusively breastfed prior to this. Unfortunately she hasn't yet outgrown her allergies but I've been told that most children outgrow cmpa by the age of 3.

In your case I would be concerned about the rash and snottiness as this could mean your child has an IGE mediated allergy rather than a non IGE allergy (An IGE mediated allergy is one where the immune system immediately reacts by releasing histamine and can cause hives and possibly anaphylaxis, non IGE is a delayed reaction: no chance of anaphylaxis). These need different types of treatment.

Your Dr seems to be treating this as a non IGE mediated allergy and has given you the correct information if this is the case. However, If an IGE allergy is suspected, you will need a referral to an allergy clinic for skin prick testing and should be given an antihistamine (or in some cases an epipen). Food trials e.g the milk ladder, shouldn't be trialled without supervision.

You should also be on the look out for soy allergy as something like 60% of kids who have cmpa are also allergic to soy.

There is a great cmpa support group on Facebook and you will find lots of good recipes and food finds on there for when you hit the weaning stage. Good luck.

@MamaRaisingBoys This sounds awful Can he tolerate any dairy at all? Just ridiculous that your concerns were dismissed. Thankfully my GP was very understanding and pro active.

My 9 month old ds has suspected cmpa. I have no advice as we're not using formula but just wanted you to feel less alone. Hope you find a solution soon op

@Chwaraeteg How can I be sure it’s an IGE allergy? Will I only know this when he’s being weaned?

The rash only appeared yesterday (See pic) A day after putting him on Aptamil Pepti. His hands were also mottled. Hospital weren’t concerned at all which surprised me.

If he improves on the Aptamil Pepti and then we reintroduce SMA and he deteriorates, then should I ask to be referred to a dietican/allergy clinic? If he doesn’t improve on the Aptamil Pepti then i’m wondering what would happen next? Perhaps they’d put him on a different milk that didn’t contain lactose? I assume if he doesn’t improve on this milk then it’s not a cow’s milk allergy?

DD wasn't diagnosed until closer to one as we couldn't figure out what was causing her eczema until finally getting a referral to a doctor who tested with a milk challenge but she outgrew her allergy sometime between 3 and 4 years old. It's one of those allergies that is quite common to outgrow I think so there is hope.

Lactose free won't help as its likely he's reacting to the protein in milk whereas lactose is the sugar

I won't put him back on sma if he improves as it's a backwards step that could make him ill again

I wouldn't be happy to mess about trying things if you feel he's better on the pepti

If he isn't I'd be back asking for a paediatrician referral and for neocate formula

@Fraggle84 But if he doesn’t improve on Aptamil (which has lactose in) Then could it be a lactose intolerance rather than CMPA? My understanding is that the Aptamil is a cow’s milk based formula but the protein is broken down and doesn’t cause a reaction.
I wonder how i’d know if it was an IGE or non IGE allergy? I’m such a worrier in general, things like this really cause me anxiety!

My almost two year old was diagnosed at around 12 weeks. He’d been reacting to my breastmilk since the beginning. He had mucousy nappies with stringy blood in them.

He was given Similac Alimentum so I could mix feed which is the pre digested milk protein and he thrived. When we weaned we did it totally dairy free - it’s really difficult at first but you get to grips with it pretty quick.

I agree with PP that if he improves on the Aptimal, don’t put him back on the SMA as he won’t grow out of it that quickly, it’s likely he’ll have to build up a tolerance which is what the milk ladder is supposed to do.

We can’t seem to get past the first step of the milk ladder but started to try at about 15 months after the dietician appointment.

Some weaning tips though;

• Oatly Barista is a really great milk alternative - really fatty and the calcium level is the same (I think) as cows milk. I used it for making white sauces etc from the beginning because honestly, the formula smells like vomit.

• Lots and lots of birthday cakes are dairy free already as they use oil. I bought the smallest cake ever from the free from section for about £15 before someone told me!

• I generally avoided the free from section and alternatives really, other than milk and butter which I replaced with vitalite spread. I found it better to avoid chocolate rather than try and alternative which just wasn’t the same for me.

It’s a worry but there is lots more available now than there used to be and it’s warned about on more menus etc. We manage okay and I don’t think he feels hard done by for not always getting what everyone else gets. Buffets at parties are your friend!

@facedowninthedirt Thanks for these tips!
I do worry about eating out at restaurants or on holiday. I suppose we’d have to play it safe with the same kind of food every time? What does your little one have when you eat out?

Most outgrow CMPA but it can take a while. I think the stats are 80% are fine by age 5. My DD took until around age 7.
A good nursery will have no problem catering for this. It's quite common. Have a chat with them about it now to establish if you and they are happy with how they will deal with it.
He might be fine by 13 months but he might not.

Bolognese or plain chicken breast are good ideas but honestly, chips are safe almost all of the time so almost always go for that on a meal out. I’d go for fish fingers over chicken nuggets because the fish fingers are likely breadcrumbed rather than batter which normally has milk in.

It’s really daunting at first but it honestly does get easier. If you’re cooking from scratch it’s much easier than having to check every packet. Lots of the Coleman’s/Schwartz type sachets have milk added so tend to avoid them too!

@villagefete If he is reacting immediately to dairy (within 2 hours of exposure) it could be an ige mediated allergy. If it's a delayed reaction the way it's a non ige allergy. You can get skin prick tests to confirm ige allergies but not for non ige.

www.ncbi.nlm.nih.gov/pmc/articles/PMC4979917/

Aptamil pepti is a hydrolysed formula so it is cows milk that has been treated to change the molecules in it so that the immune system no longer recognises them as cows milk. Some babies still react to that and have to have an amino acid formula instead, like neocate.