My Experience of A Cow’s Milk Protein Allergy (CMPA) Baby

Aria newbornWhen I was pregnant with Aria I felt pretty confident about the whole newborn baby thing. I’d done it before, sure breast-feeding can be tricky at first and the sleepless nights exhausting, but it was totally manageable with my son.

It sounds silly to say this, but every baby is different. However, I never truly realised how different until my second baby arrived. Things I had learnt with Logan just didn’t apply to Aria and I realise just how naïve I had been about it all.

Aria took to breastfeeding pretty well (unlike my son), but it soon became apparent she was not a good sleeper (also unlike my son). She became pretty unsettled almost as soon as she got home from hospital at 2 days at old. We wrote it off as colic.

Unsettled became inconsolable, crying extended to hours day and night, she’d throw her head back and cough, hiccup and sometimes sound like she was choking desperately after feeds. Then the health visitor stopped by and checked her weight and she had stopped gaining.

I remember those days (and nights) with sheer, desperate exhaustion. I didn’t know what was wrong with my baby, but I began to suspect it was more than colic. She’d spend some days wanting to breastfeed all day long, and then after several days of constantly feeding and screaming, she would crash and refuse to eat and do nothing but sleep. Then repeat. I was surviving on about 3 hours sleep a day some days. My worst night I finally got her to sleep and my 3 year old son starting chittering ready to start the day, I sobbed, then I got up and thanked the Gods of TV.

On one of the hottest days this summer, she was about 4 or 5 weeks old and I just couldn’t get her to feed, she just turned her head and slept. I rang the doctors in tears. I was worried about dehydration. The doctor checked her over, assured me she wasn’t dehydrated and said to just syringe cooled, boiled water into her to prevent her from dehydrating should it happen again. Total common sense, but in my sleep deprived and desperate state I was unable to see a solution. My baby was refusing to feed and I just knew something wasn’t right. The photo used on this post actually was a day I remember well, it was a beautiful day and my mum had come over to visit and this was only time in that day that we managed to get Aria to sleep at all. The rest of the day we spent taking turns pacing.

I remember a feeling of utter helplessness. We would try all sorts to try & get her to settle. Pacing, slings, bouncer we even bought a giant swing thing in the hope it would help her sleep. All different holds and patting, nothing would work. I would veer between what am I doing wrong my baby is so sad, to selfishly thinking I cannot take anymore crying today. Aria may have shed plenty of helpless tears, but I shed plenty of my own.

The  of course, I felt terrible guilt that I was neglecting my 2 and a half year old son. Who up to a few weeks before had been an only child with both of his parent’s full attention and now not only did he have a new sister, he had a sick one who fully monopolised his mummy’s time. I am so grateful for friends and family over this time who helped us out.

It wasn’t the GP or even my Health Visitor that suggested what Aria’s problem might be. No, in the end it was good old Twitter. Some lovely Mums on there suggested it might be Silent Reflux. At 5 weeks (it felt a lot longer) Aria was diagnosed with Silent Reflux, as well as posterior tongue tie and lip tie (which were later cut) and the GP suggested I try cutting milk out of my diet.

At this stage we were on weekly weighing visits from the health visitor who was becoming concerned at her lack of weight gain. She also had a rash all over face, which we initially thought was baby acne, I now believe it to be linked to her dairy allergy.

We tried Gaviscon (not much luck), but found Ranitidine helped a lot. But the biggest thing that helped Aria was cutting all dairy out of my diet (I was exclusively breastfeeding).  The prospect seemed really daunting at first, we eat so much dairy in our foods and it’s hidden in everything. Plus.. chocolate *weeps*. Also, lactose intolerant foods are no good as babies are usually allergic to milk protein – not lactose.

But, after 3 weeks the difference it made was immense. Aria went from a desperately unhappy baby to much more settled, her skin began to clear and she began putting on weight. She was, quite frankly a different baby.

Then, one weekend she went backwards, we couldn’t work out what was wrong, but our sad baby was back. I went through my diet and the only thing I could think of was I had had sausages. A phone call to the butchers and they revealed they used milk in the rusk they mix into the sausage meat. Just that small amount had upset her again. I knew I had to be meticulous with my diet, but it was worth it because the difference was so obvious to see.

In terms of her weight, Aria was a rather large baby when she was born at 11lbs and on the 100th centile, she has now stabilised on the 50th centile. She is tall and I would class her as slim (not the case when she was born!), so she has lost a lot of weight overall, but is thankfully happy and healthy now. You can see the difference in the pictures below.

Aria 3 days old

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(Image by Helen Light Photography)

Aria 3 months old

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I think they almost look like different babies! We’re still making our way through our dairy free journey, weaning has presented its challenges and I have yet to get Aria to take to dairy free formula. But we have come a long way.

If you think you’re baby might suffer from cow’s milk allergy I would recommend you check out Is It Cow’s Milk Allergy or talk to your GP/Health Visitor.

This post is part of Ghost Writer Mummy’s #maternitymatters Linky.

Maternity Matters~ Ghostwritermummy

26 thoughts on “My Experience of A Cow’s Milk Protein Allergy (CMPA) Baby

  1. Ah bless! Didn’t realise you had the reflux to cope with too! The way you described those early days brings my own pre-diagnosis experiences flooding right back!! *shudders* Well done for helping to raise the profile of cmpa! That Is is Cow’s Milk Allergy website is a fantastic resource!

  2. Thanks so much @dairyfreebabyandme yes silent reflux too, I still think the dairy allergy and the reflux were interlinked. It’s a really good website isn’t it? Your blog has been incredibly helpful too! Xx

  3. Oh my goodness I could’ve written this myself! Our girls are so alike and i know only too well how awful the crying and the sleepless nights are. Thank you for your support, it is much appreciated. And thank you for linking up to #MaternityMatters x x x

  4. @ghostwritermummy I felt the same when I was reading your blog Susanne. I’m glad to support you it’s a hard journey and you only know what it’s like when you have lived through it.

  5. Gosh your story is so similar to ours!! Interestingly my LO also had a posterior lip & tongue tie which we had snipped – not sure if it’s a coincidence or a link, but quite a few CMPA/CMPI bubs I know had ties too.
    Thanks for sharing 🙂

    1. I have begun to wonder if there is a link between tongue and lip tie too. As a lot of babies who have experienced these problems seem to have it. It does make you wonder, poor babies. Thanks for reading and commenting 🙂

  6. Brings back many memories of the months my son suffered! He was finally diagnosed at 16 months after a long and difficult fight! I’m so sorry you’ve gone through this difficult journey too, and so pleased things are improved for you! x

  7. Glad am not the only one. Would not want another mother or baby to go through what we went through. I also have a little boy who was 2.5 years old and felt awful for him too. My baby was bottle fed. Found out reflux at 6 weeks old. And cows milk protein allergy at 7.5 months have been at my wits end with worry. She still does not sleep well. Thanks for sharing x

  8. Oh my! What a journey! My little one has CMA. I was unable to breastfeed, and so we were using formula. We had the same spiral and even had blood in my little ones nappy… she would scream for hours at night with trapped wind that she just couldn’t get up no matter how much we burped her or patted or bounced. It was awful! I’m glad Aria is doing better now xx

  9. Im GLad You found The problem as we call it in our House.my son got diagnosed (after 6,5 months of screaming his head off)on holiday in different country as for here gp & HV were usless!told me first his colics will stop at 3 months then at 6 months…With neocate he was a different child.His reflux Surprisely has disappeared when we switched to new formula! Now his sister only 5 weeks old been diagnosed as well after throwing up blood and not gaining much weight..now I know more so I stood my grounds with gp.Couple years ago when I had my son they thought I was paranoid first time mum!is a Shame they label mothers this way.Passive actions has stollen 6 months of my sons life.i mean I didn’t enjoy my motherhood then.Now is a different story.Is not easy to be a mum of 2 but a lot. Easier then it was to be a mum of one with cows milk allergy and knowing there is something wrong with formula but nobody was listening to me then!

  10. I went through All this with my little boy 13 weeks of crying what was wrong with him
    It’s surprising the difference once all milk and soya was taken from my diet I had a happy baby

  11. I am so glad to hear you found the milk protein allergy so quickly. I was a first time mum with no experience when it happened with my little boy. After 6 months of goodness knows how many trips to the doctors for various diagnosis’ ranging from reflux to skin conditions and being fobbed off by the health visitor team I made my own diagnosis through online research and trial and error. I was Breastfeeding at the time so cut out all dairy which worked a treat but I couldn’t produce fast enough so ended up on soya based formula. Once I could prove the difference the help I received from my doctor was unbelievable. I saw a paediatrician within days and finally after 2 1/2 years have a happy boy on a fixed diet. The frustrating thing for me was that I found out afterwards there was a paediatrician within the health visitor team and they could have helped me much sooner and never offered it.

  12. This brings back so many memories of my daughter and her Cows milk protein allergy. Born at 6lb 6oz at 4 months old she weighed a pathetic 8lb. She was finally diagnosed at 5 months old after bi-weekly weigh ins by the health visitor and receiving useless advice such as expressing every feed as they didn’t think I had much milk while I was breastfeeding (I was drowning in the stuff). She was eventually diagnosed by a student health visitor who was a paediatric nurse with a special interest in allergies. I’d already cut out dairy as I had an inkling that’s what was wrong but she was even allergic to my milk. Then we discovered nutramigen. It was our saviour. She remained small for her age. 0-3 month baby grows at a year. She’s now 3. She’s still a dot, but a happy, healthy soya eating dot. All the best to you and Aria. Xxx

  13. I just wanted to give some reassurance to all the mums who have little babies newly diagnosed. It was quite a shock when my daughter was diagnosed at 9 months. Things had got so bad she started reacting to everything and had severe multiple food allergies. I didn’t know how I would cope with the massively exclusive diet (dairy, wheat, citrus, berries, egg, kiwi, pineapple, cherry) and at a later date rice and corn too. My daughter is almost 4. She is a happy, well adjusted child who understands her allergies brilliantly. She has travelled from under the 25th centile to the 90th!!! Things do get easier, the odd contamination doesn’t stress us out as much, but we’re never out of reach of the epipen!!! Good luck to you all, enjoy your babies xxx

  14. all my children have suffered from reflux … after my first born i instantly recognised it in my second and third …. in my third it was horrendous .. she broke out in a rash and screamed and screamed … like all my children before me i made my case to the doctor and he said i was just thinking about my other two and said that with my third was just having bad colic … in my third childs second week on this green earth she stopped breathing .. we rushed her to the hospital .. luckily she had started breathing again and was in good hands … turns out … severe reflux with milk protein allergy .. she was sent home with ranitadine, losec and the milk neocate ( my second child had nutramigen) withing 2 days i had a really settled baby , every so often she would out grow the med, my doctor refused to change the dose of the med and i had to get the paediatrican involved and i can only thank the paeditrition for helping us so much … My doc and healthvisitors were not very helpful at all

  15. My lo had reflux and is allergic to cows milk and he also has tongue tie.he is nearly 7months old and hasn’t had it snipped yet.but I can totally relate to your post and feel for everyone who has been through it.doctors didnt help at all they said it was his injection at first cus u get side effects from that.but obviously couldnt keep on blaming it on that.my dietician diagnosed him in the end.well done to everyone that has been through it because it was an extremely challenging time for me.also av two other boys 2 and 8.thankyou for posting it to help othersxxxxxxxxxx

  16. It looks like my post has resonated with a lot of mums. So horrid that we all had so many sad babies.

    @Nathalie 16 months how hard for you to wait that long for a diagnosis. I don’t think a lot of GPs are that clued up on it.

    @Sarah Thanks for reading I’m hoping it will help some mums. Aria’s better than she was but still not the best sleeper either.

    @Ellie the screaming is just awful isn’t it? You never forget it. I hope your little one is doing better now?

    @Monika I am sorry you went through such a difficult time of it, and I do understand what you mean there were some days when parenting was hell when you have a distressed baby crying all of the time. It’s amazing what a change of diet/milk does too. I found my health visitor pretty useless too to be honest. I have lost confidence in them, but was lucky to see a very good GP.

    @Lorri so amazing the difference it made, glad your baby is doing better now x

    @Kirstie I think I was more confident and more pushy as Aria was my second child, I just knew it wasn’t right for a baby to be like this. But I have found the help I received from medical professionals was very hit and miss. One GP was fantastic another was terrible and just suggested I express and thicken every feed (imagine trying to do that for every feed with 2 children!). One health visitor was helpful another suggested I try and feed the baby more (!!) when she stopped gaining.

    @Laura thanks so much for your comment, so hit and miss the with medical help. I was also told to express and thicken every feed and to try and feed the baby more. Because of her tendency to feed for days and then not, there were days I too was drowning in milk. Lucky I didn get mastitis really. So glad your little one is flourishing 🙂

  17. @Pippa that is lovely to hear thank you so much for stopping by and commenting. I saw the dietitian today actually and she did say that as Aria became more mobile there would be occasions when she picked up things she shouldn’t especially with an older sibling and I would need to learn to go with it. So glad to hear how well you’re doing.

    @Jakki oh my goodness how awfully scary for you, so glad all is ok now. I have had to call up and get the meds adjusted occasionally with weight gain too, I am grateful that there was a very good GP at my surgery who picked up on it. It must be awful for it to go on for months or worse. We did have some choking periods so I dread to think x

    @Gemma thank you, I really hope it does help others as it really does seem that health visitors ands GPs regularly don’t pick up on it 🙁 your LO is about the same age as Aria, if you’re breastfeeding I would definitely recommend for pushing for tongue tie to be cut. Good luck xx

  18. It brings me back to the early days with my son unfortunately he wasn’t diagnosed till he was 7 months old!!! he slept well and gained weight well but in-between the sleep he was such an unhappy little baby and in constant pain we went through months and months of trying to get to the bottom of it. Suggestions of Colic, Silent Reflux, Acid reflux, Reflux. We tried 4 different milks after i finished breast feeding including a ‘stay down’ milk, Gaviscon, Ratinidine, Donperidone all sorts then when i couldn’t get himon solids because he would scream in agony i finally got sent to a paediatrician who diagnosed him and put him on Neocate and within 3 weeks he was a different baby happy and having 3 meals a day. We are doing it all again now with my new baby girl but this time im in control and know what she needs nearly all settled at 3 months hasn’t took as long this time

  19. @Laura 7 months to diagnose you poor things 🙁 glad he is doing well now but so sad that the GP didn’t pick up on it before, and it must be tough having to go through it a second time but as you say at least you know what to look for this time.x

  20. Reading this was like you had written it about my baby girl!! She was diagnosed a month ago with cmpa after a long 5 months of constant crying, upset tummy, wheezing, runny nose ect…. Finally the doctors listened to me and referred her and she has been a different baby since I’ve cut dairy out of my diet! I’ve also have an older son and have had times where I have felt terribly guilty about the amount of time our daughter has taken up as a result of cmpa, luckily he doesn’t seem to have been affected by it at all and now my baby is better and sleeping we are all so much happier!! 🙂

  21. My baby got cow’s milk allergy. I was very worried. However i found that some substitutes can be given. I gave him substitutes and he is drinking them without any problem.

  22. @milkallergy thanks for reading and commenting we have tried some milk substitute formula, but she just refuses to take it. So after talking to the dietician I am going to breastfeed her until she is one.

  23. My lo had reflux and is allergic to cows milk and he also has tongue tie.he is nearly 7months old and hasn’t had it snipped yet.but I can totally relate to your post and feel for everyone who has been through it.doctors didn’t help at all they said it was his injection at first cus u get side effects from that.but obviously couldn’t keep on blaming it on that.my dietitian diagnosed him in the end.well done to everyone that has been through it because it was an extremely challenging time for me.also av two other boys 2 and 8.thank you for posting it to help others

    1. Yes I have an older son and it is so hard to give them attention when your baby is crying and needs your attention all of the time. I hope that things have improved for you xx

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