LO just been diagnosed with cows milk protein allergy - help on foods please.

[TTC LADY]

So Rohan's paedrician just called with the results of his blood test and he has CMPA. I'm confused and could really do with some advice from those whose LO have this allergy.

I have been advised to eliminate all dairy from his dairy, however I can continue to eat dairy as very little of the protein passes through the breast milk apparently.

For those whose LO have this allergy - can you give goats milk, soy milk. What do you do in terms of yogurts, cheese etc to ensure they still get the right amount of calcium intake. Are there any alternatives available in supermarkets.

Is it just dairy I need to eliminate, what about processed things which contain milk - ie buiscuits etc

 

[babyjan]

Hello

My son is 20 months and was diagnosed with cmpa when we began weaning so after 6 months I noticed he had it after reacting to anything with dairy. I still breastfeed and I have dairy which his ok with.

He has basically been on a diary free diet from day one as his always been breastfeed, he can have soya but I chose to not give it although the doctor said its fine after 6 months. I've tried goats milk and unfortunately his also allergic to that.

There are a lot of alternatives, for butter he has Pure and there's also Vitalet ( think that's how it's spelt) there are loads of soya yogurts out there. He can basically have anything we eat as I don't really cook anything containing milk, mash potatoe for example I use coconut milk.


I think I've answered everything, if you need to know anything else just let me know

It's hard because my son suffers a reaction even from having milk touch his skin and when we go to families houses he always somehow gets some sort of reaction but we are managing and are very grateful for the alternatives we have here.

I also thought he would've outgrown it by now but we will just wait and see xx

Forgot to add that you need to keep your son away from anything that contains milk, biscuits, crisps etc.. If his anything like my son he will have a reaction even from the tiniest amount of milk.

 

[TTC LADY]

Thank you very much for the comments. It all confusing and will take me some time to get my head around what he can / cannot have. I will look out for the butter you mention - assume it is available in the supermarket.

What sort of symptoms does your LO get. Rohan seems to get extremely itchy face as soon as he is in contact with milk. My little girl gave him a little bit of her yogurt yesterday and within minutes he was scratching his face. He doesn't seems to have any oer symptoms yet.

I will give goats milk a go. His paedrician has prescribed him nutramigen for use in cereals etc. he is also EBF so has never had formula milk

Have you also eliminated foods which contain hidden milk powders ie biscuits, cakes out of his diet or just fresh dairy produce.

Thanks you in advance for you advise.

 

[summer rain]

Please do not give goats' milk! It's a myth that it is suitable in cases of CMPA/I, in some cases it could be extremely dangerous especially as your LO's problem was diagnosed with blood testing this would suggest it is a true allergy as opposed to an intolerance which in rare cases goats' milk can be ok for. While there is one type of protein in cows' milk that is in lesser quantities or absent from goats' milk depending on the breed of goat it seems, other proteins that are the same or similar to cows' milk proteins are present and may be present in higher concentrations. Goats' milk and goats' milk formula is not advised by the NHS for allergic children and with extremely good reason. I would be cautious with soya as well as a high percentage of cows' milk allergic babies are also allergic or intolerant to soya, some aren't though but excessive soya isn't good for anyone-in moderation it's ok. My second eldest had a true allergy like this and he outgrew it completely by aged two. He was also allergic to eggs and still is though he is usually ok with eggs used in processed foods, 'straight' eggs give him a bumpy sandpapery rash which is very itchy. This made things harder but we just cooked from scratch and got inventive xx

 

[summer rain]

Also with the symptoms you describe it's important to make sure your LO doesn't come into contact with milk even as a trace ingredient because each exposure to milk they become more and more sensitised. Second eldest started off with slight hives the first time he came into contact with dairy, a tiny drop went on his skin when a cousin was opening a from age frais and the lid splattered it. Then a couple of months later OH was having a yoghurt and when it was finished my son grabbed the spoon, and OH let him lick it not thinking he shouldn't do so, immediately he came up in massive welts all over, his whole face swelled up like a balloon and he couldn't breathe at all. OH called an ambulance but it wasn't coming so he shoved DS in the car and drove to a&e where they gave him loads of those little pink steroid tablets, something similar to piriton and put him on a nebuliser for hours. He still didn't go back to normal but at least he could breathe so they released him. A few months later he had a similar reaction just touching an empty milk carton that as far as I know didn't have any traces of milk on the outside. Thankfully by 1.5 years he could tolerate cooked dairy products and by 2 he has outgrown it completely xx

 

[babyjan]

Thank you very much for the comments. It all confusing and will take me some time to get my head around what he can / cannot have. I will look out for the butter you mention - assume it is available in the supermarket.

What sort of symptoms does your LO get. Rohan seems to get extremely itchy face as soon as he is in contact with milk. My little girl gave him a little bit of her yogurt yesterday and within minutes he was scratching his face. He doesn't seems to have any oer symptoms yet.

I will give goats milk a go. His paedrician has prescribed him nutramigen for use in cereals etc. he is also EBF so has never had formula milk

Have you also eliminated foods which contain hidden milk powders ie biscuits, cakes out of his diet or just fresh dairy produce.

Thanks you in advance for you advise.

Yes I have, everything and anything can trigger a reaction

Did you get any leaflets on cmpa? There are a few things mentioned that can contain milk that you would least suspect.

My son gets rashes immediately after eating or touching any milk products, the rashes are bright red all over his body particularly his face, his reactions are different at times also depending on how much milk has got into him, but always comes with rashes sometimes he coughs, vomits, gets wheezy, swelling to his eyelids and lips and a few times became weak and drowsy.

He has antihistamine which is given straight after a reaction, have you been given anything incase of a reaction? My son takes Chlorphenamine Maleate, it's a syrup.

 

[babyjan]

Also with the symptoms you describe it's important to make sure your LO doesn't come into contact with milk even as a trace ingredient because each exposure to milk they become more and more sensitised. Second eldest started off with slight hives the first time he came into contact with dairy, a tiny drop went on his skin when a cousin was opening a from age frais and the lid splattered it. Then a couple of months later OH was having a yoghurt and when it was finished my son grabbed the spoon, and OH let him lick it not thinking he shouldn't do so, immediately he came up in massive welts all over, his whole face swelled up like a balloon and he couldn't breathe at all. OH called an ambulance but it wasn't coming so he shoved DS in the car and drove to a&e where they gave him loads of those little pink steroid tablets, something similar to piriton and put him on a nebuliser for hours. He still didn't go back to normal but at least he could breathe so they released him. A few months later he had a similar reaction just touching an empty milk carton that as far as I know didn't have any traces of milk on the outside. Thankfully by 1.5 years he could tolerate cooked dairy products and by 2 he has outgrown it completely xx

The fact that your son outgrew it by 2 gives me hope. My son will be two December 31st and still allergic.

We've been advised by dieticians and allergy specialist to try every 6 months to check if his still allergic.

We was actually in a&e about a month ago as a stupidly left a pack of chocolate fingers on the kitchen work top. I didn't even think he would see it and reach for it. I turned away for two seconds and found him eating the chocolate, I immediately gave him the Chlorphenamine, at this point he only had tiny red dots around his mouth, within 5 minutes he was itching his eyes, his whole face was red, eyelids swollen and wouldn't stop crying. He took in a lot of the chocolate, we decided to go hospital because it was taking a while to go down and was just getting worse, by the time we reached hospital his colour returned and he only has slight swelling.

 

[Joss_Taylor]

My LO was tested for a CMPA and at the time off the test, he was 3 weeks, he wasn't allergic but the allergist said he could become allergic as he ages. And he's got a horrible intolerance to milk. My DH has a severe CMPA and were going to treat LO like he has one as well. Soy works good for hubby but the soy formula we used on baby sent us to the emergency room. We he starts eating real food were going to avoid everything that has milk it it. They sell imitation cheese and there are so many recipes that making living with a CMPA easier.

 

[summer rain]

Also with the symptoms you describe it's important to make sure your LO doesn't come into contact with milk even as a trace ingredient because each exposure to milk they become more and more sensitised. Second eldest started off with slight hives the first time he came into contact with dairy, a tiny drop went on his skin when a cousin was opening a from age frais and the lid splattered it. Then a couple of months later OH was having a yoghurt and when it was finished my son grabbed the spoon, and OH let him lick it not thinking he shouldn't do so, immediately he came up in massive welts all over, his whole face swelled up like a balloon and he couldn't breathe at all. OH called an ambulance but it wasn't coming so he shoved DS in the car and drove to a&e where they gave him loads of those little pink steroid tablets, something similar to piriton and put him on a nebuliser for hours. He still didn't go back to normal but at least he could breathe so they released him. A few months later he had a similar reaction just touching an empty milk carton that as far as I know didn't have any traces of milk on the outside. Thankfully by 1.5 years he could tolerate cooked dairy products and by 2 he has outgrown it completely xx

The fact that your son outgrew it by 2 gives me hope. My son will be two December 31st and still allergic.

We've been advised by dieticians and allergy specialist to try every 6 months to check if his still allergic.

We was actually in a&e about a month ago as a stupidly left a pack of chocolate fingers on the kitchen work top. I didn't even think he would see it and reach for it. I turned away for two seconds and found him eating the chocolate, I immediately gave him the Chlorphenamine, at this point he only had tiny red dots around his mouth, within 5 minutes he was itching his eyes, his whole face was red, eyelids swollen and wouldn't stop crying. He took in a lot of the chocolate, we decided to go hospital because it was taking a while to go down and was just getting worse, by the time we reached hospital his colour returned and he only has slight swelling.

For us it got worse before it got better. We were told he would probably be more like five when he outgrew it but to try him with dairy every few months, because of the severity of his reactions this was meant to be in hospital under controlled conditions but being the NHS they discharged him completely from paediatric outpatients as soon as he started gaining weight better even though he still had his allergies as badly as ever. He had pizza with melted cheese aged about 18 months and was fine, we then tried him with uncooked dairy and he came out in hives though way less severe than before. He is asthmatic now but it's mild asthma he doesn't even have to have the reliever inhaler everyday, we were told 80% of children with severe milk or egg allergy go on to develop moderate to severe asthma so we got off pretty lightly xx

 

[summer rain]

If you google 'alternative stores' they are a fantastic shop in Newcastle and they deliver nationally (presuming you're in the UK) they sell dairy and soya free cheeses and everything they sell is completely free of animal products xx

 

[Miss Vintage]

If you google 'alternative stores' they are a fantastic shop in Newcastle and they deliver nationally (presuming you're in the UK) they sell dairy and soya free cheeses and everything they sell is completely free of animal products xx

Summer Rain, that's really useful to know, thank you. L has CMPI and can't eat soya either, but every free-from cheese, spread etc. seems to be based on soya and I've not been able to find any alternative locally.

 

[TTC LADY]

So what do you do as a milk substitute for your little man ?

 

[TTC LADY]

Interesting , because my paedrician told me to continue to eat dairy even though I am Exclusively breast feeding. Something about LO becoming desensitised to it.

 

[TTC LADY]

Thank you very much for the comments. It all confusing and will take me some time to get my head around what he can / cannot have. I will look out for the butter you mention - assume it is available in the supermarket.

What sort of symptoms does your LO get. Rohan seems to get extremely itchy face as soon as he is in contact with milk. My little girl gave him a little bit of her yogurt yesterday and within minutes he was scratching his face. He doesn't seems to have any oer symptoms yet.

I will give goats milk a go. His paedrician has prescribed him nutramigen for use in cereals etc. he is also EBF so has never had formula milk

Have you also eliminated foods which contain hidden milk powders ie biscuits, cakes out of his diet or just fresh dairy produce.

Thanks you in advance for you advise.

Yes I have, everything and anything can trigger a reaction

Did you get any leaflets on cmpa? There are a few things mentioned that can contain milk that you would least suspect.

My son gets rashes immediately after eating or touching any milk products, the rashes are bright red all over his body particularly his face, his reactions are different at times also depending on how much milk has got into him, but always comes with rashes sometimes he coughs, vomits, gets wheezy, swelling to his eyelids and lips and a few times became weak and drowsy.

He has antihistamine which is given straight after a reaction, have you been given anything incase of a reaction? My son takes Chlorphenamine Maleate, it's a syrup.

Hi - we only got the results back today so I am ignorant to this. Will need to do some serious reading over next few days on CMPA. We are seeing the paedrician early next week, I assume he will prescribe some antihistamine in case of a reaction. Does the one your LO takes, work well ?

Also, what are you using as a milk substitute in his diet to ensure he continues to get enough calcium intake ?. I plan to continue BF but will struggle to pump enough to add to weetabix for example.

Thanks

 

[weejenb]

Hi, my LO has CMPI, diagnosed at 18 weeks.

He gets one weetabix with 3oz of Nutramigen in place of milk. Foods I tend to give mainly fruit/veg/meat, and he still gets four bottles of Nutramigen a day too. I love Ellas Kitchen pouches for when we're out - a big majority of them are dairy free and they're organic and extremely tasty too. I would avoid soya products as others have said - my LO wasn't intolerant to the yoghurts I gave him but it turned out they were FULL of sugar so I stopped giving them! We use Vitalite (a dairy free spread) also. I make a lot of my own food for him too so I know its definitely dairy free. As others have said, we avoid any foods containing any milk products, for example (not that I would give him these anyway) but some brands of crisps contain milk, which you would never think.

Check ingredients really carefully, as even thought it might not state: 'MILK' these are a list of ingredients which contain milk (i have this list saved on my phone)

Casein (curds)
Hydrolysed caseinates
Whey, whey solids
Whey protein
Hydrolysed whey
Lactalbumin
Lactose
Skimmed milk powder
Milk solids
Non-fat milk solids
Butterfat
Modified milk

Also, Nutramigen have a wonderful booklet on dairy free weaning which you can read here and also download: https://www.nutramigen.co.uk/files/8113/4735/6997/Consumer_booklet_3-FINAL.pdf

When we first got the diagnosis, I was quite stressed and panicked and worried that he wouldn't have anything to eat. But as time goes on, you just automatically go for foods without dairy without consciously thinking about it any more, if that makes sense? It's definitely doable and not as hard as you might first think! LO has started nursery recently and I was worried about them not understanding his allergy, but they've been brilliant. Went through the whole menu with me, crossed out what he can/can't have, and make brilliant substitutions for him.

I know its scary but trust me, once you've been living with it for a while you soon get used to it!

I'm no doctor btw but I'm confused about your doctors recommendation for you to keep eating dairy - as far as I know, mums who BF CMPA babies have to eliminate dairy, its what I've always read?

 

[TTC LADY]

Hi, my LO has CMPI, diagnosed at 18 weeks.

He gets one weetabix with 3oz of Nutramigen in place of milk. Foods I tend to give mainly fruit/veg/meat, and he still gets four bottles of Nutramigen a day too. I love Ellas Kitchen pouches for when we're out - a big majority of them are dairy free and they're organic and extremely tasty too. I would avoid soya products as others have said - my LO wasn't intolerant to the yoghurts I gave him but it turned out they were FULL of sugar so I stopped giving them! We use Vitalite (a dairy free spread) also. I make a lot of my own food for him too so I know its definitely dairy free. As others have said, we avoid any foods containing any milk products, for example (not that I would give him these anyway) but some brands of crisps contain milk, which you would never think.

Check ingredients really carefully, as even thought it might not state: 'MILK' these are a list of ingredients which contain milk (i have this list saved on my phone)

Casein (curds)
Hydrolysed caseinates
Whey, whey solids
Whey protein
Hydrolysed whey
Lactalbumin
Lactose
Skimmed milk powder
Milk solids
Non-fat milk solids
Butterfat
Modified milk

Also, Nutramigen have a wonderful booklet on dairy free weaning which you can read here and also download: https://www.nutramigen.co.uk/files/8113/4735/6997/Consumer_booklet_3-FINAL.pdf

When we first got the diagnosis, I was quite stressed and panicked and worried that he wouldn't have anything to eat. But as time goes on, you just automatically go for foods without dairy without consciously thinking about it any more, if that makes sense? It's definitely doable and not as hard as you might first think! LO has started nursery recently and I was worried about them not understanding his allergy, but they've been brilliant. Went through the whole menu with me, crossed out what he can/can't have, and make brilliant substitutions for him.

I know its scary but trust me, once you've been living with it for a while you soon get used to it!

I'm no doctor btw but I'm confused about your doctors recommendation for you to keep eating dairy - as far as I know, mums who BF CMPA babies have to eliminate dairy, its what I've always read?

THANK YOU SO MUCH for this post and for the link to the Nutramigen website. Rohan has been prescribed Nutramigen AA - yet to try it with him as he is EBF, will try to mix in with some food initially to get him used to the taste of it.

It is scary for me at the moment, but the more research and reading I do the more confident I become that we will still be able to get the right vitamins and minerals into him, without comprimising his development. We also have a great paedrician consultant who is on hand all the time.

With regards to his advice for me to continue to eat dairy - I was also a little surprised by this advice, but its all about desenitization. Current treatment of food allergies consists of the elimination of the offending food from the diet (child and mother if BF) Desensitization or tolerance induction is an alternative for those children who have not achieved tolerance spontaneously. Its about exposing the babys immune system to small levels of the offending food over a period of time, so that there body builds up a natural tolerance, as the level of protein passing thru into breast milk is very small quantity, this is apparently a good way for his system to get used to it. Otherwise they can get too sensitised and even a small amount can cause an adverse reaction. There have been various studies conducted on this over the last few years which conclude that this protocol is effective and safe for the baby.

See this link

https://med.stanford.edu/ism/2011/march/milk.html

 

[summer rain]

There is a difference with true cows' milk allergy which is what Rohan has and cows milk intolerance. With the intolerance there is the need for mum to eliminate dairy however with the true allergy things work differently and there is no proven benefit of the mother excluding dairy from her diet, although in some cases CMPA can cause eczema and poor weight gain in which case elimination in mum's diet may help.

There is a product called koko coconut milk and tesco do their own version, it's slightly higher in fat than semi skimmed so isn't suitable as a main drink for under 12 months (some specialists will approve it for babies over 12 months) but it is completely fine in cooking and baking and has the same calcium as cows' milk as well as other added vitamins. It works better in cooking/baking than cows' milk as it has a far higher smoke point and it's impossible to curdle. You can find it in the milk chiller in stores or for the uht version with all the other uht milks.

 

[summer rain]

If you google 'alternative stores' they are a fantastic shop in Newcastle and they deliver nationally (presuming you're in the UK) they sell dairy and soya free cheeses and everything they sell is completely free of animal products xx

Summer Rain, that's really useful to know, thank you. L has CMPI and can't eat soya either, but every free-from cheese, spread etc. seems to be based on soya and I've not been able to find any alternative locally.

The cheeses they sell are amazing better than dairy cheese. They are even suitable for those with enzyme/metabolic disorders including PKU where the individual cannot process protein because most of these cheeses sold by Alternative Stores are either 0% protein or close to it. I think the cheese spread they sell is soya though unfortunately, as there isn't any non-soya 'cheese spread' available in the UK at present. There is another brand not sold by them called vegusto, they have their own website. Their cheeses are much pricier but gorgeous, and they are made of healthy, natural ingredients. They are cashew butter based though so not suitable in the case of nut allergy xx

 

[TTC LADY]

There is a difference with true cows' milk allergy which is what Rohan has and cows milk intolerance. With the intolerance there is the need for mum to eliminate dairy however with the true allergy things work differently and there is no proven benefit of the mother excluding dairy from her diet, although in some cases CMPA can cause eczema and poor weight gain in which case elimination in mum's diet may help.

There is a product called koko coconut milk and tesco do their own version, it's slightly higher in fat than semi skimmed so isn't suitable as a main drink for under 12 months (some specialists will approve it for babies over 12 months) but it is completely fine in cooking and baking and has the same calcium as cows' milk as well as other added vitamins. It works better in cooking/baking than cows' milk as it has a far higher smoke point and it's impossible to curdle. You can find it in the milk chiller in stores or for the uht version with all the other uht milks.

Is Koko coconut milk suitable to use with cereals in your opinion.

 

[summer rain]

Yes it is it's totally fine in foods, cereals and cooking from 6 months just not as a main drink. The coconut milk also contains medium chain fatty acids which are found in breast milk but not in any great quantity in cows' milk or most infant formulas. The fat content is slightly higher than semi skimmed hence it not being recommended until at least 12 months as a main drink and then only if GP/Paed approves usually if weight gain is good and there is enough fat elsewhere in the diet, the only negative of it is there is barely any protein in it but if there is ample protein elsewhere in the diet this isn't a problem at all. Xx