4th June 2019
Around 3% of babies are allergic to milk.Two of my three terrors are #cmpa – cows milk protein allergy. It can be a frustrating, sleepless journey that leaves you feeling quite helpless watching your little ones in pain, dehydrated, on drips, losing weight, back and forth to the doctors, in and out of hospitals trying to get to the bottom of what is happening in their small bodies and why they seem to be rejecting their sole source of nutrition.
T2 was prem and I expressed for her to be tube fed the first few days. I struggled with my supply (and morale). Double pumping and crying in my side room whilst looking at photos of my baby (in SCBU). The first time they had to top her up with formula she was sick instantly. They had to empty her stomach via her NG tube and it was lumpy undigested formula. I pumped every three hours, day and night for over an hour a time (I was still in hospital myself) and she was tube fed every 1.5hr – 30ml as her weight was dropping every day but after a week I couldn’t keep up.
When she came home after a couple of weeks she weighed 4lb and I tried to alternate formula and breast milk but every time she had formula she was projectile sick. Real horizontal across the room. She would scream whilst being fed. No one could get milk in her. She was being sick all the time. She refused her milk and just screamed what felt like all the time – it took so long to get just 30ml in her and she was supposed to be having that every 2hr for her weight. She would scream, groan, writhe, vomit and diarrhea all day and night and continuously have a distended belly. It was so sad to see and it felt like I was poisoning with her milk but it didn’t make sense – that’s what babies drink!? I kept a milk diary and was back and forth the doctors and in and out of hospital.
Those newborn days are hard enough as it is and I had a super crazy two year old to look after too. We moved through all the re-flux medications and alternative formulas – off the shelf, over the counter and prescribed but nothing made a difference. She and I were hospitalized a further three times over the next month – dehydration, still losing weight, impossible to feed. T2 was finally put on Neocate when she was about 7 weeks old. FINALLY she would take a bottle. It took about a week for her symptoms to ease off and it was gradual. She was still a ‘sicky’ baby and I was guided by her pediatric team to wean at 17 weeks old, 12 weeks corrected – she couldn’t even hold her head up – it was hopeless. I’d stop and try again a week later until eventually we saw improvements – although still a lot of sick!
I weaned T2 dairy and soya free and it was a whole new experience. T1 was a milk monster – he had loved his bottles and weaning him was relatively easy. He seemed to like everything and I could try him with anything. First tastes were okay with T2 but she was sick on a lot of smooth purées but wasn’t advanced enough for the chunkier textures so we did a lot of baby led once she was a little older.
Learning to check the ingredients of everything became second nature. Allergens are in bold which is handy but so much has milk or a milk variation in it or soya. I worried about calcium intake (I still do!) and I still struggle with desserts without making alternatives from scratch which I don’t always have time for.
The #milkladder is something used to gradually introduce milk products into babies diet. It starts with something like a malted milk biscuit and through between 7 and 12 (randomly unhealthy – in my opinion – things like muffins, pancakes, pizza and chocolate!) steps ending in cows milk being tolerated. T2 has just turned two and finally is able to accept all rungs of the ladder except pure cows milk, even enjoying her first ever proper ice cream on holiday last week.
T2 is an incredible eater and does so well with anything I give her. We use a lot of vegan alternatives now throughout the household which is much easier although T1 doesn’t like the taste of some of it so I am often preparing a couple of different meals to suit their tastes and requirements.
Floras recent move to a completely vegan range is amazing (although for risk of contamination allergy sufferers should use the specific dairy free version still). It’s frustrating a lot of the alternative yoghurts are pricey – in my opinion. KOKO twin pack of small yoghurts is about £2.50 but I can buy a four pack of munch bunch for £1.
T3 is also dairy free. He’s 11 months now and the weaning journey has been pretty easy as I know what to expect, what to look for, products that work, I’m also more knowledgeable about alternatives and different sources of calcium. T3 was a completely different journey that’s still ongoing as he’s under the allergy clinic for various other suspected triggers as his affects his breathing as well as his skin. He was back and forth to the hospital for suspected aspiration, chest X-rays and CF testing when he was smaller because he couldn’t seem to take his milk in right. He was always a healthy weight so it never seemed to be prioritised. He was on six courses of antibiotics back to back with what they thought were chest infections which wouldn’t clear up and eventually an ambulance and in hospital because of breathing problems potentially caused by us having a real Christmas tree. He now has two asthma pumps for when he dips and is on the wait list for official allergy testing to find other triggers. I’m not doing the milk ladder with him as breathing problems panic me more than sick and I’ve been told to wait until he’s two (and until we’ve had the official testing). He loves his food though and tucks into and loves everything he tries.
T1 is completely fine in the allergy department and is able to eat anything but ironically is not fussed about food at all … an entire all inclusive buffet to choose from and this is his plate. Every time. I’m not sure he’s mine
This beautiful chaos