Cows Milk Protein Allergy: It’s Not As Rare As You Think!

Permalink

I hesitated to write this post, as I actually feel that a lot has been written about Cows Milk Protein Allergy elsewhere and there is a lot of information out there which is really helpful for anyone whose baby suffers with CMPA. But it took us a very long time to diagnose Ben with CMPA, and the primary reason for that is that most of what I read said that it was very rare for breastfed babies to react adversely to cows milk when it was ingested through breastmilk – I would read stats that said something like 1%. But in my experience it’s far more common than that would lead you to believe – I think the current diagnosis rate is 4%, but just in my own circle of friends and acquaintances, I know at least 5 other children who have Cows Milk Protein Allergy. We didn’t make the step to cut out dairy until Ben was 7 months old, and if I’d realised how common it was, I might have tried earlier and saved ourselves months of pain. So, as this is Food Allergy Awareness Week, I wanted to share our story of Cows Milk Protein Allergy journey.

 

Our Story

When we brought Ben home from the hospital, we honestly thought we’d lucked out. Not only did he sleep really well on that first night in the hospital, he proved to be a very chilled out little baby who dropped off when he needed to in the day, and slept really well during the night. For the first 6 weeks, he slept for around 5-6 hours straight at night, and we actually thought we had a sleeper this time! It really was such a contrast from his older brother, who resisted sleep with every fibre of his being. For those first 6 weeks, I was genuinely enjoying the baby days, despite often saying before how it really wasn’t the stage of motherhood that I enjoyed.

 

Ben at 1 week old, swaddled

 

But at 6 weeks, something started to change. He was up far more often in the night and was far less settled during the day. He would pull his legs up to his chest and it was clear he was really struggling with wind. He also became constipated, crying not only when he pooed, but when he passed wind too, and he would only have a poo once every 10-14 days. Everything I read online said that it was perfectly normal for breastfed babies to not poo for that long, and when I brought this up with our health visitors, they asked whether his stools were hard (they weren’t), and insisted that ‘breastfed babies don’t get constipated’ and it was just his bowels being immature.

It was such a gradual process that I don’t think I quite noticed it happening, but our happy smiley baby was also slowly being replaced by one who cried inconsolably a lot of the time. You could still make him smile if you really worked for it, but in general, he wasn’t a happy baby. In the early days you’re told that this is ‘just colic’ – the catchall for any crying from a baby.

As time went on, colic should have stopped, and yet the crying didn’t. I absolutely love Instagram, and I think it was telling that my Instagram feed, which you would have expected to be filled with photos of my cute new baby, was noticeably lacking in baby photos as he spent most of his time crying, with me desperately trying to settle him. Not particularly Instagram worthy!

 

Baby dressed in grey jumper with star on it, smiling up at the camera, holding a brown knitted Maileg sleepy wakey deer

 

At around 3 months, he was diagnosed with silent reflux, and we did manage to ease his crying with a prescription for Ranitidine. It definitely seemed to help him, but as time went on, the crying began to build again.

His sleep, which had initially been so good, began to get worse. And then even worse. On a good night he would be up every 2 hours, and on a bad one, he would be waking up screaming, taking about an hour to resettle, and then be up again screaming 10 minutes after you thought you had him asleep. We were absolutely shattered.

I looked up the symptoms of CMPA, but really, aside from the silent reflux, constipation and the constant crying, Ben didn’t really tick any other boxes. No eczema, no projectile vomiting, no rashes, no bloody or mucousy nappies. And so, foolishly in hindsight, I dismissed that possibility.

And then at 6 months we started on solid food. Ben took to it so well – he absolutely loved it all, embracing all of the new flavours we were giving him. And the thing he liked best of all was custard. And knowing what I know now, I feel absolutely awful about that! After a week of just small tastes of food, it was clear that he was having real problems with digestion. His tummy pain had got so much worse and the constipation was horrendous. We had already been trying all of the usual constipation relief techniques with him – tummy massage, warm water, bicycle legs, warm baths – to no effect, and we started only feeding him pears and prunes to try to soften everything up. But none of this had any impact at all.

Two things happened at the same time. I went to the doctor to get some laxatives to help Ben, and I decided it was worth a try going dairy free, just to see if it did improve anything. I have to admit that I was reluctant – I love my creamy desserts and my lattes! But by this point, I figured that if it did turn out to be CMPA, that at least we had a way to improve things for Ben.

 

Going Dairy Free

I actually found cutting out dairy nowhere near as difficult as I had expected. I already read the wonderful blog Dilan and Me, and knew that Lauren, who writes it, ran a Facebook group for Breastfeeding with CMPA, so I promptly joined that. Through that, I read all of the pinned posts and worked out what we needed to do to eliminate dairy and then to confirm the allergy. It set realistic expectations for me – I didn’t expect to see any improvements early on, and I committed to cutting out dairy for 6 weeks as an initial trial.

Finding alternatives to dairy was one of my biggest concerns. Ben still wasn’t sleeping, and caffeine was one of the only things that was getting me through. And I really don’t like black coffee! Thankfully Oatly Barista came to my rescue – an oat milk that is foamable, but more importantly for me, doesn’t split in coffee like other non-dairy milks. My other concern was chocolate and other treats. I love my chocolate! Dilan and Me came to the rescue again with Lauren’s Diary and Soya-free Treat List – so many chocolate treats that it’s hard to feel like you’re missing out!

The thing I found more difficult was eating out. You soon get used to asking for the allergy menu, but although all restaurants are legally obliged to provide allergy information, they’re not legally obliged to provide a meal that you can actually eat. Cutting out soy as well as dairy is especially challenging – so many foods that you wouldn’t think would be a problem use soya in them. Most of my slip ups to date have been from eating out – I think milk allergy is something that a lot of people still don’t take seriously.

 

Finding the Answers

It took 2 weeks for Ben to show any improvement at all. Although if I’m honest, that 2 weeks did include a few slip ups from me – one instance where I had a coffee at a cafe with coconut milk that I later found contained soya, and another with a biscuit that contained soya lecithins. But at around 2 weeks I started to see glimpses of a happier baby. By 6 weeks, he was so different that I was absolutely positive that the dairy was the problem, and when just after 6 weeks, he accidentally ate some chicken which contained milk and suddenly reverted to pulling his legs up and screaming in pain again, I was absolutely sure that we had confirmed it.

Two months down the line, and it sounds like a cliche, but he really is like a different baby. He’s such a happy little guy, and so laid back and easy to keep amused. Far more like that relaxed little newborn we brought home from the hospital. It seems hard to believe that this happy little baby is the same one who needed to be held constantly and who cried and cried and cried. There is a huge part of me that feels resentful and guilty that I didn’t make the step to cut out dairy first, and that I deprived us both of enjoying those newborn days and instead put us through months of pain and difficulties. But at the same time, I’m grateful that at least we made the move to cut out dairy when we did, that he’s not in pain anymore and his personality can shine through.

 

Ben sat amongst the purple crocuses, wearing a grey bunny bonnet

 

What took so much longer to improve were his sleeping patterns. I think the reality of it is that we’d built some bad sleep habits. I wouldn’t feed him to sleep every time he woke up (because he woke so frequently that would have been ridiculous!), but if it had been 3 hours or more since his last feed then I would, because it was so much easier to settle him to sleep afterwards. Sometimes you just do what you need to do to get through it! Slowly he moved to waking every 3 hours, before we felt we were ready to drop to one night feed, and then to cut it out completely. The good nights slowly became more frequent, but it was a really slow path. And then, out of nowhere, he’s started doing the odd night where he’ll sleep through until 4am, and I honestly can’t tell you how happy that makes me. I feel like a different woman, and the improvement in my mood is staggering. I feel finally like there’s light at the end of the tunnel – we’ve had a year of interrupted sleep and it really had been a killer!

 

What Next?

We still have to go through the difficulties of starting the milk and soya ladders with Ben, which I know that the doctors will push us to start now that he’s almost 12 months. It’s something that I’m pretty nervous about, especially as I still feel that he’s really sensitive to both milk and soya. I had a slip up just a couple of weeks ago, and I definitely noticed those old symptoms returning, so I don’t feel he’s ready to try just yet. But with any luck, he’ll become less sensitive as this year continues and hopefully should outgrow it soon.

 

If you have suspicions that your baby may have CMPA, I really recommend trialling cutting out dairy for 6 weeks and then reintroducing it, to see whether it makes a difference. I really wish we’d done it sooner and I’d not missed out on all those months of the happy baby that I now have.

 

Cows Milk Protein Allergy: It's not as rare as you think