CMP Allergy - FINAL UPDATE 06/02/11

Hope this is in the right place!

I breastfed Ellie for 16 months until she self weaned & I'm so proud of that I planned to see how we went with Riley but knew I wanted to bf for at least 6 months. It's looking very likely that Riley has a CMP (cows milk protein) intolerance/allergy and we're waiting to see pedi at that moment, in the meantime I've cut all dairy from my diet and we've seen a big improvement which is great (that we know what it is) but I'm finding it VERY restricting and dont think thats realistic long term.

I have noticed that since increasing soya in my diet has caused my IBS to become really bad, its making me feel so bloated and sick a lot of the time which isnt nice at all. I've also noticed that when I eat more soya Riley seems restless and lots more wind so i'm wondering if maybe he has a sensitivity to that too

I know deep down that the best thing for Riley is going to be to switch to special formula as at least then he wouldn't be in pain from foods that I eat but i'm really struggling to accept it I REALLY dont want to give up breastfeeding, it upsets me when I think about it & just cant imagine not breastfeeding him, im filling up just writing this I could continue BF and cut out all dairy/soya but long term I dont think its possible as I know if I make a mistake and eat something containing CMP then he'll be in pain and sooo many foods contain it that I never realised before!

The reason for my post is as I have some questions for mums that made the decision to stop if you dont mind...
* I wondered your reasons for stopping (if you dont mind sharing) and how did you come to that decision?
* How did you feel after stopping? Did you know you'd made the right decision? Did you feel guilty? Do you regret it?
* Did it effect your health in anyway (ie mentally/depression)?
* Did it effect how close you felt to your baby?

Obviously I dont plan on making any decisions until speaking to pediatrician etc but im trying to prepare myself, if/when I do move over i'd do it gradually.
Just wanted to hear others experiences really x

happy_chick wrote:

The reason for my post is as I have some questions for mums that made the decision to stop if you dont mind...
* I wondered your reasons for stopping (if you dont mind sharing) and how did you come to that decision?
* How did you feel after stopping? Did you know you'd made the right decision? Did you feel guilty? Do you regret it?
* Did it effect your health in anyway (ie mentally/depression)?
* Did it effect how close you felt to your baby?

Obviously I dont plan on making any decisions until speaking to pediatrician etc but im trying to prepare myself, if/when I do move over i'd do it gradually.
Just wanted to hear others experiences really x

I HAVE A HEART PROBLEM AND HAD TO GIVE UP when Emma was 14 months as i had to have a heart opp (open heart surgery) and i'd be in hospital for a week or so and not able to pick her up for 3 months so it was the best thing to do so my mum could have her while i was in hospital (she lived in plymouth at the time and i had my opp in southampton hospital) and after when she looked after me, i really didn't have choice and i hated that i really didn't want to give it up as i loved breastfeeding Emma but i knew it was the only option so i guess it made it easier in a way, i went through alot of emotional things at the tikme and i remember crying over it alot i hated the fact i have a heart problem becasue i had to give it up and hated everyone who kept going on at me about it but looking back t it now i` know i gave her the best for 14 months and i'm content with that i mean every day you breastfeed counts doesn't it and i think of all the goodness she had i feel happy i was able to do it so successfully ok i didn't feed her for as long as i liked but i gave her the best
oh and it didn't affect my bond with her as when i had my opp she was still so clingy and our bond was so strong however becasue i was in hospital for a week she started clingging onto my mum for confort becasue i was suddenly not there an not able to pick her up but i got that back as soon as i was able to pick her up again and look after her on my own and we have a great bond now hope this helps

Thanks for replying I really appreciate it! Well done for getting to
14 months, you should be super proud!! x

i am now, although it's strange cas Benjamin (emma is 6 now) is now 14 months and i gave up at this age so all problems i get from now if any are going to be new for me lol

Soy often will cause a reaction too, I would definatly cut this out immediately.

I would have a read of this if you haven't already.

Sensitivity to cow's milk proteins
Breastfed babies who are sensitive to dairy in mom's diet are sensitive to specific cow's milk antibodies, in the form of proteins (not lactose), which pass into the mother's milk. Cow's milk (either in the mother's diet or engineered into formula) is a common source of food sensitivity in babies. Cow's milk sensitivity or allergy can cause colic-like symptoms, eczema, wheezing, vomiting, diarrhea (including bloody diarrhea), constipation, hives, and/or a stuffy, itchy nose.
If your baby is sensitive to dairy in your diet, it will not help to switch to lactose-free dairy products. The problem is the cow’s milk proteins, not the lactose. Cooking dairy products may reduce but will not eliminate the allergens.
A significant percentage of babies with cow's milk protein allergy will also react to soy. Most dairy-allergic babies will also react to goat's milk or sheep’s milk. Some will also react to beef.
If you think that your baby may be sensitive to dairy products in your diet, remember that it can take 10 days to 3 weeks to eliminate cow's milk protein from your system—allow a full 2-3 weeks of dairy elimination before evaluating the results.
If your baby is only a little sensitive to dairy proteins, you may be able to relieve baby’s symptoms by eliminating only the obvious sources of dairy (milk, cream, yogurt, butter, cheese, sour cream, ice cream, cottage cheese, etc.); you may even be able to eat small amounts of dairy without it affecting baby.
If your baby is highly allergic, it will be necessary to eliminate all sources of dairy proteins, which requires a careful reading of food labels. See the Hidden Dairy "Cheat Sheet" ().
If you've cut out dairy because your breastfed baby is sensitive to cow’s milk proteins, you may be able to phase it back in after a few months. Many dairy-sensitive babies outgrow their sensitivity by 6-18 months, and most outgrow it by 3 years.
If you reintroduce dairy into your diet and baby reacts, cut out dairy products again for at least another month. If baby’s allergy to cow's milk protein via breastmilk is severe, it's best to wait at least 6 months before trying to reintroduce dairy. For allergic babies, avoiding the allergen makes it less likely that baby will develop a lifelong or life threatening allergy.


I do think however that soucing calcium yourself from other things will allow you to continue your breastfeeding relationship if this i something you wanted to do and definatley ditch that soy.

Hun this is very hard what you have to do and a total change to what you experienced the first time round, please if you decide that switching is best for you both then you must go with what you feel. But if you feel you can do this and YOU want to keep going as you feel its best (as to weighing up the advantages of either being best) then you can do that too.

Thanks Tasha! Just seen this as I came back update.

He does have a milk intolerance, i've decided to remain totally dairy free and continue to exclusively breastfeed for now and then mix feed when i'm ready and see if he can tolerate a very small amount of dairy in my diet. He's also reacting to goats milk so thats out too, its sooo hard!!

We've been referred to a dietician, me for help with being dairy free and then for advice/support when we are weaning.

I'm feeling quite proud at the moment that i've battled on even thought we've had lots of problems... Tongue Tie, which he had released... Reflux, which he's now on meds for... Dairy Intolerance, which is very restricting for me!! I always thought my second would be a piece of cake but boy was i wrong!!

Thanks for replies x

I am so pleased that at least you know now whats wrong.

Your doing so well hunny, before you know it he will be 1 and you will be wondering where the time went ( I certainly am!) I would really struggle with cutting out dairy and im such a dairy lover ( love chocolate especialy!!!) so you shoudl be so proud.

Your doing a wonderful thing for your little boy and good luck!!!

Just wanted to update and say we're still going, i've tried to stop but he just totally refuses the prescribed formula. At a bit of a loss to be honest as we've been trying for months! Been dairy free for 4 months and its very hard, Riley's intolerance is getting worse if anything so I really do need to stop asap but really struggling, have tried everything I can think of and my only option left is to go cold turkey and hope he takes the formula

Any advice appreciated x

i dont have advice sorry but just wanted to offer support in the form of a hug

angpixi wrote: i dont have advice sorry but just wanted to offer support in the form of a hug

same here hunny

Thank you!! x

Have you been in touch with La leche or lactation consultant.

Only I say this because they may be able to offer more advice as to why things are not improving for Riley.

Could you join the La leche forum? and/or join Kellymom?
I feel there will be a much wider scale of women on these that would have been in the same situation etc.

You must be very frustrated, and I am sure if you could carry on bfing and seeing improvment it would make the dairy free diet easier to cope with, and I can see it would be incredibly hard to keep momentum up if your not seeing improvement!

Just a question though, what is your typical diet?

He's improved dramatically with me cutting out dairy and it obviously spurred me on at first but i'm finding it so difficult now as i'm so bored of all the foods that I can have! When I said his intolerance is getting worse I mean that if I eat a very small amount of dairy he has a bad reaction so its not even an option for me to have the odd treat.

We are still trying, several times a day!! He will take 1-2oz at a time but never enough to stop breastfeeding, his dietician thinks if I want to stop then he'll take the formula but i'm not convinced. I'm going to try him with weetabix next week and mix that with the neocate to get some down him that way, I cant see how I can get 18oz minimum into him through his food though?

I have seen our local breastfeeding counsellor (i'm a peer support worker so have regular contact) and also various bf support workers and we have all drawn a blank

My diet at the moment is very carb based as i'm quite restricted, i'm trying to have a balanced diet and get lots of protein, fruit, veg etc but its difficult when looking after 2 kids aswell. I'm taking calcium and also multi vits x

All I can say is I am sorry your in such a difficult situation, I know its not quite the same but I have had to stopped all forms of cows with Olivia as it made her eczema flare up.
I have been able to make lots of nice sweet things (mm cocoa) and I am able to use goats milk in cooking (doesn't effect her skin like cows) but even feeling the slight restriction has made me aware of how much cows is in all our food and soya is another evil in lots of our food!

I am quite lucky in that I even with these two I am able to make a lot of our food from scratch and I know how time consuming this is, so i can't imagine how much more difficult it must be for you

I am managing ok but its just feeling so restricted kinda takes it toll after a while, sometimes all I want to do is curl up with some choc and I cant lol!! He's worth it though I do love breastfeeding and i'm so proud that i've managed so long without dairy though. Thanks again hun xx

i think youve done fantastic, i understand how hard it is to plan and shop and cook for a restricted diet ozzy was on one until he was about 7, i dont think you realise how many things are in your foods until you look. but i agree seeing the results make it all worth while. have you got time to write down your experiences? i wrote a kind of diary for those years when oz was really ill and looking back now i still get a shock when i read what we went through, it helped me at the time to get my frustrations out!

That must have been really hard ang!

Yeh i had thought about doing some sort of blog or something, might help me get out some of the frustration and just write things down really. Also I can show him how much he put me through when he's older lolll!!!

If I do start a blog i'll post the link as it may help others in the same or simular sitation Thanks x

Please do hun

We saw his dietician yesterday, she's prescribed another milk to try but its the last and final one there is and we're not hopeful that he'll take it but it worth a shot!!

His weight isnt great still, he's gaining but slowly and they're concerned that he's dropping in centiles still so we have to get as many calories in him as possible which means cutting down breastfeeds and replacing with solids, not what i'm used to but it needs to be done!

Its also looking likely that he does have a soya allergy/intolerance so we're going to retry that in a week or so to confirm, pretty gutted as soya is apparantly in 90% of premade foods will let you know how we get on x

Just want to say you are doing so well Jo

Thats right, Soya is in a high amount of premade food

Hope something starts working for you soon and well done on continuing with the booby feeds.

Just wanted to update to say that we're still going 7 months!!!

He's definitely soya intolerant too so things are pretty difficult but we are figuring things out by reading all the packets in the supermarket lol!! He's still not taking the formula, his weight gain is very slow so the dietician has given us some glucose type powder (dont know the name!) that will give him extra calories and hopefully build it up so his weight gain picks up.

Poor boy, he's not had an easy time but he's still always smiling

Hope everyone else is ok x

so pleased your all ok otherwise hun

You should be very proud!

Just wanted to update that we finished bf a couple of weeks ago & he's doing really well on neocate (prescribed formula). We got to 8 months & can't believe it x

Well done for getting to 8 months