Our Experience - Cow’s Milk Protein Allergy and My New Venture

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 wasn’t 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 I reluctantly switched to formula just so that he was fulfilled and stopped screaming. It worked! He stopped crying after his feed and conked out.  I was so relieved that he was settled for the first time and sleeping. He was so tired and I was so happy that he could finally relax, but no, not for long! The bottle did seem to make him sleep initially and we were up every 2-3 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 but still wanted to suck away at the bottle (I assumed he was so hungry.) 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 an hour a time then become restless and cry for a little bit and then the next feed was due. During the day however, he never slept and he would want his feeds and take them but was never relaxed during or after – screaming and crying.  I tried everything, rocking, swinging, patting, shushing, swaddling, 3 hour pram walks, car journeys, skin to skin – NOTHING worked.  He just would not settle to sleep.

 

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 was so desperate for help I took him to have a privately paid cranium therapy to help his nervous system settle from birth 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.  I was doing everything and nothing was working.  I remember speaking to family and friends and getting the same advice ‘he will settle in time, it is all new.’ But how long would it take?!

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.  I am convinced that as a result of such a traumatic start in life he is not a cuddly baby because he relates certain positions with being uncomfortable. 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 and reflux. 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 36 hours. 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.  I was so sleep deprived and I was becoming quite low and feeling like I was not meant to be a Mum.

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 would take him to the doctor and describe the inconsolable cries and thrashing around, I would point out his poor face full of a rash and was constantly sent away with the diagnosis of baby acne and silent reflux. My poor little boy was on medication for reflux, constipation and indigestion all at 3 weeks old! I hated giving him medicine, it felt so wrong. 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. With yet another out of hours trip to the doctor we were eventually prescribed Nutramigen milk along with all of the medication for silent reflux and constipation, this seemed to help slightly but then it was less than a week and we were soon back to square on; crying and thrashing and constipation continued. I persisted and went back to the doctors again, I told them I could no longer feed my baby the milk and that something was clearly wrong and to my surprise 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.  What was most shocking was that he told me to stop all medication informing me none of it was necessary! I was shell shocked, I had been giving my poor baby medication for nearly 5 weeks that he did not need!

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 was very difficult though and I realised there was a definite need for parent help with sleep.

 I realised quickly there was very little help and support for first time parents in advice around sleep and routine.  I was constantly searching the internet reading articles on different sites trying to work out how to get him to take naps and sleep through.  It was sending me into a spiral of conflicting advice and over thinking! I decided there was a huge need in this area and I looked into training in sleep consultancy.  I set to work on learning everything from the Science of sleep, routines, sleep cycles, behaviours and most importantly; solutions! 6 months on and I am now a certified Sleep Nanny consultant and have launched my own business; Babbaboo Sleep.  I have worked with many families with lots of different sleep problems from feeding to sleep at 14 months, early rising and general toddlers that refuse! It is a fantastic and rewarding job to be able to offer support to parents because it is something I feel so passionate about; sleep is so important for cognitive, emotional and physical development in children and I feel that a lot of parents do not have basic knowledge around the importance of sleep.  That is where my job comes in to ‘educate and empower parents for better sleep.’  I devise bespoke plans to work individually with each families situation, sometimes, it only takes a few tweaks but I have found that parents are so grateful to have someone who understand the torture of sleep deprivation and for having someone tell them it is ok and it will be fixed.

We have come a long way since the birth of my little boy 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. There is always help somewhere.

 Although a milk allergy is hard to diagnose, it is possible and you have to have faith that things will get better.  The more common symptoms to look out for; dry and swollen rash around eyes and mouth, thrashing and inconsolable crying, wanting to feed often (comfort soothing,) blood in stools, mucus nappies, constipation, vomiting and slow weight gain.

 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!)

 It has been a tough journey and I have learnt so much and I am excited by the prospect of helping new parents understand the importance of sleep and offer my knowledge and guidance.

Trust your mother instincts and remember there is always help somewhere!

Laura, Babbaboo Sleep.

Babbaboosleep.com