Allergies in our house have been mild; hayfever and contact dermatitis at most. I can’t wear cheap jewellery because it brings me up in a blistery rash; much to the alarm of boyfriends past. So when our second daughter was born, and later diagnosed with having a cow’s milk protein allergy (CMPA), it was a pretty big surprise. But the road to a formal diagnosis took nearly four months. All the information I had gleaned about her potential allergy, came from friends who had been through the same drudgery and final diagnosis.
All babies cry…
Our daughter was unhappy after the first week or so at home. Intense crying in what looked like pretty constant pain, knees constantly up, red face, tearful when not asleep or feeding. And then, as we established breastfeeding, she was bobbing on and off the breast, meaning she was taking in more air, and that meant more discomfort. Loose, often green, nappies, reflux possets, red dry rash on her face and on parts of her body, noisy breathing, snuffly nose, straining at night (all night), and the odd cough. I was told that all of these symptoms can be signs of other things, or just part of a baby’s development, and I felt like a ‘mad mother’ telling the doctor and health visitors that ‘my baby cries a lot’, because babies cry, right? And the resounding answer I received was ‘ yes, babies cry’. But even though I was repeatedly told it was ‘normal’, I just knew something more was wrong.
Could it be ‘colic’?
Within a few weeks, our daughter developed so called ‘colic’, which is ‘unexplained crying’. It went on for most of the day, peaking between 5pm and 8pm for around 2.5 hours. Personally, and especially since our experience, I just don’t believe in ‘unexplained crying’, so I pressed on to find out the cause. It had been challenging to establish breastfeeding, but we had done it together – team work. I then read that a ‘bad latch’ could cause colic so, keen to continue, I solely expressed for two weeks, to no avail. This is no mean feat, especially when you also have a three-year-old, and a newborn who is still upset and won’t be put down. The second-born screamed everywhere. Would not go in a pram, chair or mat. The only place she was calm was in a carrier, so I carried her everywhere, until my back said ‘no more’. The first born started crying ‘because the baby is crying’, which was an incredibly tense time. We finally moved her into an upright pram seat, and the storm calmed, and she FINALLY napped during the day. [I swear by our Ickle Bubba Eclipse – my absolute saviour that I was (very luckily) sent to review for GoodTo.com ] Though I still walk gripping the pram handle; a habit I formed while attempting, in vain, to walk her around in the pram those first few months. Babies just look so cute and cosy lying in a bassinet, but it just wasn’t feasible for us.
Holding on
Eliminating the options
Every medical professional I saw told me that everything would change at 12 weeks. I had a phonecall dietician appointment sent to me for when she would turn 16 weeks. That sounded to me like mental health problems and panic anxiety, for me and my partner, would have settled in nicely, by then. And goodness knows what pain for the baby. It was also continuing to affect our older daughter, who hated going in the car because her sister screamed so much. So I kept taking her back to the doctors and he prescribed Baby Gaviscon for potential reflux (that made her constipated for days and what came out after was horrendous – would never use that again), and a gel for oral thrush (something she never had. He gave the prescription because he saw a photo of inside her mouth that turned out to be an Epstein pearl). Nice one. I know there are processes and elimination techniques, but no one once suggested that dairy, or cow’s milk, might be a problem. Due to the pandemic, health visiting was limited. We had one initial visit face-to-face at home, then were given a phone number hotline to call with any issues.
Love conquers all
Going dairy-free
Talking to friends, they suggested I cut out dairy. That seemed insurmountable to me. I am an emotional eater, so the stress was pushing me into eating mountains of chocolate, cake, milky coffees, and loads of cheese. Could this be the issue? Turns out, yes, it was.
On the 10th October 2021, I cut out dairy, completely. Prior to the dairy conversations, I had tried her on a couple of formula milks (Aptamil and Kendamil), and she had flared up with rashes and bad nappies. So along with my diet reform, I went back to the doctor to request trying a milk free formula. I was nervous because I had been told it might be met with resistance, as, I guess, the formulas aren’t cheap. I had a visit from a health visitor the day before and she gave me a print out about CMPA. The first mention of it formally from any health professional. To my surprise, at the doctors, a formula was prescribed – Aptamil Pepti. We tried it, and she flared up again. Massively and rapidly. Why? The formula label read that it still had milk protein in it!
A diagnosis
Back I went, to another doctor, who finally formally diagnosed her with CMPA. He prescribed yet another that had a milk protein, (sigh), so I phoned back and from my own research requested Neocate, which is amino acid-based. No milk protein. And happily, she has flourished, and been mixed fed since around five months old. I am still on a dairy-free diet, even though I am not breastfeeding any more since going dairy-free actually gave me an intolerance myself! Being able to give my daughter formula feeds has helped me with sharing the load with family, and also balancing time with my other daughter. I was still breast pumping twice a day, up to five and a half months, to give her a bottle at the top and tail of the day, because, being a bottle mum first time round, I like to know she has had a full feed at least a few times every day. And I breastfed at night up until six months old. From four months old she became so distracted while breastfeeding, but always fed well and calmly at night.
Happiest in the carrier…
Finally, we have a happier baby. It has left a few scars, mentally, for me, though. All the screaming and red-faced crying with actual tears gave me real pains. I think it might be anxiety. I wish I had known since the start that eating dairy products could cause issues, from simple extra wind for babies, to an allergy, like ours. I am hopeful that she will grow out of the allergy, most children do, apparently. But we have an interesting road ahead in terms of introducing foods.
I also feel like I have possibly damaged friendships, without meaning to. People I have turned to for support and company have drifted away, and on my down days I wonder; was I was overly negative, and did I moan too much? Was I too honest? Should I have done better at being upbeat – was that even possible? You can be your own worst enemy, especially when you are often alone with an upset baby all day. On the better days I realise that everyone is busy and have their own issues to contend with. Loneliness has been the overriding feeling, alongside the frustration and sadness of not knowing how to placate a baby that is clearly in pain. I think some of the struggles that come with having a newborn baby in pain, especially one that doesn’t behave in the way you see on social media highlights, is that it can leave you feeling deflated and lagging behind, constantly guessing what might be the issue. Though it’s good to remember that every baby behaves uniquely, just as they are unique themselves. Perfectly unique. I think all parents definitely overthink things when tired… which is all of the time! And CMPA is manageable, so we consider ourselves incredibly lucky.
It does seem like CMPA is more common at the moment – or perhaps just more correctly diagnosed? I’m no health professional, so a lot of my information has been gathered and learned through trial. I clung to those few sheets that were given to me by a health visitor, with official lingo about why my baby was so uncomfortable. I do wonder if my cutting out of a load of dairy products while I was pregnant, due to high blood glucose levels, has something to do with her high intolerance, now. Certainly, while I was pregnant, the amount of other mums who had to test for gestational diabetes was HUGE. Perhaps due to less movement and breaking down of that glucose during the pandemic? Just a few ponderings from me, but I am very interested in the trail and possible links. I had never heard of CMPA with my first daughter. Is it really more prevalent, now, or maybe it’s that babies from previous generations, that were diagnosed as ‘colicky’, actually had more of an allergy to cow’s milk than thought?
I’d love to hear about your experiences, and the next stage for us will be to wean our baby – which I have had no advice about yet. And I have discovered many foods that I can eat and enjoy, while on a dairy-free diet. Read my top 7 dairy-free treats for days when you need a lift. I actually prefer oat milk now, and will not be going back full on, for lots of reasons.
Onwards and upwards!
