Our Experience - Cow’s Milk Protein Allergy

So, my little boy was born with a cow’s milk protein allergy. I wanted to address this as a form of support for parents that may think their child has an allergy or their child does have an allergy and are finding it particularly difficult.

I will be completely honest, I had never even heard of a cow’s milk protein allergy (CMPA) before. Looking back now it upsets me massively to know that my little boy had such a stressful start to the first 10 weeks of his life. We were extremely lucky in that we had a health visitor that came out to me regularly and advised me on how to go about getting my little boy diagnosed.

I remember it being about day 3 being home from hospital when I started to feel like everything just was not as it should be. Everything with the birth went really well and the baby weighed 8lb 1oz and was in good health. We had all had very little sleep on the first two nights and I was trying to breast feed though my milk was so slow to come through and when it did I was only expressing 1oz at a time. I put this down to my baby’s bawling crying after every feed and we quickly switched to formula just so that he was fulfilled. It worked! He stopped crying after his feed and conked out. He was so tired and I was so happy that he could finally relax, no, not for long! The bottle did seem to make him sleep initially and we were up every 3 hours in the earliest days and it would take an hour a time feeding. We quickly recognised that on every feed he would arch his back, throw his hands around, pull up his legs and scream and cry. It was devastating to watch and we did not have a clue what was the matter. The day time was always worse than the night time as between feeds at night he would sleep for a little bit. During the day however, he would not sleep and he would want his feeds and take them but was never relaxed during or after – screaming and crying.

It felt like I was failing, I tried everything and as a first time Mum and a super organised person I had read all the books and felt prepared for all of the situations a new baby would throw at us. I tried swaddling him, holding him on me skin on skin, I even took him to have a privately paid cranium therapy to help his nervous system but nothing seemed to work or console him. I felt like he did not want to bond with me and some days were really dark, especially when my husband returned to work. I remember saying to my partner ‘I don’t think I am meant to be a Mum.’ Looking back, this is all ridiculous, but at the time it wasn’t, it was lonely and I felt very helpless.

The only thing that seemed to calm him slightly was having him over our shoulder and to this day that is still his preferred cuddle position, something I am convinced is a learnt behaviour as he struggles when being cradled, he will not let himself relax. As more days passed we began noticing more symptoms; on every feed his face would go beetroot red, he was passing stools less frequently, all of his forehead was constantly scaled and dry and he would get big red lumps around his eyes and cheeks, something was not right. Our Health Visitor came out and looked at him and within minutes she said she suspected a cow’s milk protein allergy. Shocked, I asked lots of questions as I had never heard of this before. She explained that the baby’s immune system was going into attack as it was allergic to the protein, it could not digest it, hence his distraught behaviour.

We spent the next 9-10 weeks going from doctor to doctor and numerous trips to A & E. One of the main problems was that he never slept and would inconsolably cry, all day every day, he would sleep in small stints in the night but I think the longest he went without any sleep whatsoever was nearly 36hours. His tummy was hurting him so much and he was struggling to pass stools that he would feed a lot for comfort then scream during and hours afterwards. We were initially prescribed medication for silent reflux and constipation, both did nothing.

The problem we had was he was gaining weight at an average pace for his age and because of this a lot of the time we were told he had colic or wind. I truly believe you know as a parent when something is not right with your child and I am so glad I stuck to my instincts. Doctors eventually prescribed us Nutramigen milk along with all of the medication for silent reflux and constipation, this seemed to help slightly but then we were soon back to square one. I persisted and went back to the doctors again and they agreed to send me as an emergency to see a paediatrician, to say I was relieved is an understatement I was so thankful that somebody had finally listened to me and realised my despair and helplessness. The paediatrician looked at all of our 10 week’s worth of medical history (unbelievable, there was a lot!) asked a few questions and immediately diagnosed as a cow’s milk protein allergy and prescribed a hypoallergenic milk; Neocate.

I was so nervous switching his milk again as I felt like I was in a constant stream of anxiety waiting for his next hysterical outburst. There was no calm in the early days with him, it was all very tense and unnerving, I questioned myself, doctors and health visitors constantly, but I am reassured and so pleased to say that the paediatrician we saw was brilliant and explained things more clearly. When he started the new milk the change in him was instant, he took it fine and he did not cry afterwards. He began to pass stools more frequently and his skin was starting to clear. It was amazing, although there were still lots of hurdles to face. My health visitor came out to me and was relieved to see he had been diagnosed and was improving. He was still very unsettled and he would get distressed being nursed off to sleep and refused a dummy. The advice I was given was that from the traumatic time he had had, he had learnt behaviours and so cried more than he normally would because he had done little else. It took weeks longer to get him napping and moving him onto longer stretches of sleep in the night but by about 16 weeks he was sleeping through the night and he was beginning to take naps in his own cot.

It has been a very stressful experience as first time parents and I often feel a little saddened that my baby boy went through the stress and trauma and we couldn’t do anything to help, a new baby is supposed to be a lovely time and it could not be further from the truth for us. Having a newborn is one of the most challenging things in the world and learning their behaviour and cries is a minefield but having a newborn with an allergy is scary and can feel very isolating when you don’t know much about it or anyone that has gone through it. It is important to be consistent in seeking medical advice, don’t stop if you are not happy with how your baby is responding. It is so important to ask lots of questions and to talk to people; join groups online for instance.

Although it is hard to diagnose, it is possible and you have to have faith that things will get better. As a parent, you know when your baby is not right and you have to seek the advice until you feel reassured. Since I have discovered the allergy I have since learnt that there is a large chance he will outgrow it but it has been crucial to seek help around weaning as he is milk free exclusively until he is at least one year. If you suspect your baby has any symptoms seek medical advice and feel assured that it can be managed and that the awareness of CMPA is growing and there are lots of people to talk to (including me!)

Laura, Babbaboo Sleep.

Please note, I am not a medical professional. I cannot and am not trying to diagnose children with allergies, this article is purely for supportive purposes. If you do have any concerns or suspect your child has a milk allergy then visit your GP or Health Visitor.

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