“You can no longer eat dairy, I’m afraid.”
Surely there are few worse words to hear as a breastfeeding mum, especially one surviving on cheese strings and toasties? With the removal of chocolate, milk in your brew, most biscuits and cake – CAKE! – thrown in, you have yourself an imminent breakdown.
Yep, I’m talking about CMPA.
My beautiful second born daughter was diagnosed with CMPA (Cows Milk Protein Allergy) when she was 5 months old, along with another IgE allergy to egg. She has further non-IgE allergies to soya, beef, gelatine, tomatoes, banana, shellfish, nuts, barley, cassava, berries, currants and all red skinned fruits. To cut a long story short, I am not an ideal dinner guest.
“It’s ‘just’ reflux”
My first breastfeeding journey had been twenty months of plain sailing and so to have a baby who seemed to actively hate breastfeeding was actually quite soul destroying. It was slowly chipping away at my confidence. Why was I getting this so wrong? My health visitor and GP suggested it was ‘just’ reflux, ‘just’ eczema, ‘just’ oversupply.
I was frustrated, and eventually, angry as hell. Why could no-one help? Why did the professionals have no explanation for what was going on? My baby cried all day long, her raw skin flaking and expanding, her eyes puffy and swollen, her nappies full of mucous – and my mood was darkening.
I didn’t want to go to baby groups because she was always so upset. She was such an unhappy baby. My heart was breaking as I took on the full weight of her unhappiness. I was developing anxiety about leaving the house and making excuses not to go out. At five months, her symptoms ramped up, and she started to refuse breastfeeds altogether. I knew I needed to seek specialist help, and sought the advice from an IBCLC who immediately recognised we were dealing with multiple allergies.
I felt such relief.
Finally, someone was listening to me. We visited a private paediatric allergist who performed skin prick tests and confirmed her allergies. During the consultation, he told me that in order to continue breastfeeding, I would need to cut all numerous allergens from my diet completely. I didn’t mind, after it had taken so much to get to this point, it actually seemed a small price to pay to finally have a solution.
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Of course, the diagnosis came the day after my weekly food shop had been delivered. Great timing, right? Each time I went to the fridge or food cupboards I felt like crying. What on earth was I supposed to eat?! It was already so overwhelming to care for a small baby who screamed at the breast, was riddled with super sore eczema and cried constantly. To then take away all my food vices was almost too much.
For a good month I found the relentless label reading so tedious. Avoiding so many different allergens hugely restricted every, single, mealtime. Adios to my favourite granola. Farewell to beans on toast. Goodbye to prawn cocktail crisps. Au’revoir Yorkshire puddings. Auf Wiedersehen scrambled eggs. Adieu beloved, delicious Cheddar. Mac and cheese, spaghetti bolognese, chilli, pizza, butter, Chinese takeaway, steak, squirty cream, alllllllll the chocolate… yep – see ya.
It felt like everyone had an opinion
So many people could not fathom why I was cutting out so many foods, and I met comments like, “Why don’t you just stop breastfeeding so you can find out what’s wrong with her?” I do know what’s ‘wrong’ with her, and that’s why I didn’t want to stop breastfeeding! In fact, it never crossed my mind to stop breastfeeding. I don’t know if it was belligerence, or blind faith that kept me going, but I just felt that switching to formula wasn’t right for us.
That’s not to say it isn’t right for other mums. Au contraire! Breastfeeding a baby with multiple allergies is tough and it is wonderful that there are alternative formulas available for those that choose them. All power to you dairy free formula mamas out there – this journey with an allergy child goes way beyond how they’re fed. Breastfeeding was just my path.
The eureka moment
My eureka moment came on a Sunday, already feeling in a sulk about all the things I couldn’t have that day. But then I realised – hurrah! It’s Sunday roast day! By jove, I can eat meat! And potatoes! And stuffing! And veg! It was the first full meal I’d eaten in days and it was absolutely glorious.
That evening, inspired by my full tummy, I began going through all my usual recipes. For every item I couldn’t have, I swapped it out for one I could. It was like a lightbulb had been switched on, and I thought YES! I’ve actually got this, I can do it. Oat based creams and milks, smoked vegan cheese which actually melted, egg free mayonnaise, beetroot and carrot based ‘tomato’ sauce. There was virtually nothing I couldn’t have without a little tweaking. Hello beef free, tomato free, egg free, dairy free lasagne – yes, I’m being deadly serious there!
I was already used to cooking from scratch most evenings, but the more time went on the more I grew in confidence. I tried new recipes most days: creamy chicken and leek pie, curry and dairy free naan, bacon wrapped chicken parcels, risottos, carbonara, homemade garlic bread, vegan scones, cookies and my god, the things you can do with a Betty Crocker mix and a tin of pop are mind boggling.
Within days, my baby was happier
As the allergen proteins left our systems I suddenly had a smiling, cooing, clear skinned bundle of cuteness, and slowly but surely, it all got easier to deal with. Within a few days her eczema started to – quite literally – disappear before my eyes. Her swollen little face reduced in size. She stopped screaming, and would breastfeed contentedly.
She stopped snuffling like a little piglet and her cradle cap, previously thick and green, was falling out in the bath. We didn’t have to finish off every outfit with a pair of socks over her hands to stop her scratching. In short, I finally had the baby I had spent all my pregnancy dreaming of.
The long term effects
However, when I look back over my maternity I just feel sadness, and worse, failure. I am in mourning for all those months we were so unhappy together, trapped in a cycle of feeding and screaming. Days upon days on our own while everyone else was out of the house, stuck. She sobbed in her pram, she wailed in the car. I didn’t do any of the things, or visited places that I had with my first baby. I’ll never get those days back. She is my last baby, and it has been a bitter pill to swallow.
There are other long term effects. I am incredibly anxious about food. Her reaction to egg and dairy through breastmilk is so severe that she is yet to directly consume them herself and so one day we will have to trial them, likely in hospital. I am forever hawk eye-ing her every move at every play date, as she watches other children who are freely eating whatever they please.
I think about the effects constantly
My older child understands that her little sister has allergies but doesn’t understand the consequences if she should accidentally share a yogurt, or pick up a discarded cereal bowl. My whole day, every day, is spent thinking about, planning for and minimising the effects of her allergies on our family as a whole and there is no end in sight.
I am the one asking the awkward questions in the restaurant, the one declining the offer of a baked treat, the one who has to take their own milk to a friend’s house for coffee, the one checking a thousand labels in the supermarket, the one second guessing every mouthful of a meal I know is safe.
Veganism popularity has made things easier
That said, the rise in veganism has made the dairy/egg free life very accessible; shops and the internet are swamped with alternative and free-from products. As much as you’d be surprised about what things that contain dairy (yes you, alcohol free beer) you’ll be equally surprised at things that don’t. For example, did you know regular bourbon biscuits are already vegan friendly? My waistline sure does!
Some of the switches really weren’t easy. I mean, is it even possible to find a decent vegan cheese? Just like the age old frogs to Prince ratio you’ll have to kiss an awful lot of bad tasting alternative products before finding one you like. (A word to the wise, it’s not recommended to switch to soya products as the proteins are very similar to cows milk). But, for every hideous coconut based cheddar there is an Oatly Barista latte and you learn to fight the good fight for another day. It really is a case of trial and error to find something that agrees with you. Then, over time, you start to realise that you actually enjoy your alternatives and the smell of cows milk in your fella’s cuppa is positively rancid.
Follow the easiest route
My little beastie is now 19 months old (so, 14 months free from her allergens!) and I find that sympathy for our cause is starting to wane. We opted for Baby Led Weaning to make life as easy as possible; besides, there wasn’t a single jar or pouch that didn’t contain at least one allergen. Eating out is a little trickier but doable; allergies are high profile just now and rightly so, most places I’ve visited have bent over backwards to accommodate me.
I’ve found it best to contact the restaurant ahead and make them aware or ask what they can offer as it means when you get there you don’t have the headache and frustration of trying to navigate the menu for half an hour and just opting for chips anyway (can you tell I’ve done that a few times before?!).
Trusting your instinct
A mother’s instinct is rarely wrong but allergies are so misunderstood. If you suspect your baby has CMPA, keep a food and symptom diary to show your GP. Push for the dietitian referral. Join a group, ask questions. But remember, most of all, you don’t need anyone’s permission to remove dairy from your diet. Cut it out for 6 weeks (that’s how long it takes to be completely removed from both yours and baby’s systems) and see what difference it makes. Best case scenario you end up with a happy, thriving baby. Worst case, it’s only been a few weeks of avoidance.
If you’re breastfeeding a baby with allergies, or CMPA there are wonderful support groups on Facebook (such as ‘CMPA Support‘) containing a wealth of information and more importantly, other mums who are equally bloody desperate for a wedge of Edam. Find your tribe; we’re out there and – best of all – we know where the safe treats are kept!