By Lauren Gordon

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Dilan was always a “sicky” baby. People would tell me it was normal for babies to be sick, but were always shocked after seeing it for themselves. We would leave puddles of sick wherever we were. Our washing pile was constantly huge because of the amount of muslins we were using, and the clothes both Dilan and whoever was holding him would go through. When he was small he would always be feeding, sleeping or crying. We would rush around running errands trying to keep him asleep because if he woke he’d either cry or need feeding again for hours.

At around 4 months old we started to notice he wasn’t gaining weight as well as he should be. He began falling down the centiles on his growth chart and eventually fell to below the 2nd centile. My GP and Health Visitor seemed mildly concerned but assured me he was “content and alert” and “meeting milestones”. I knew something was wrong. I fought hard for medical help and eventually we were referred to a dietician and paediatrician. Meanwhile a close friend of mine was having an equally difficult experience with her little boy. Some symptoms were different to Dilan’s but both babies were bringing up so much sick. She had been referred to a dietician and given the diagnosis of CMPA (Cows’ Milk Protein Allergy), so she suggested Dilan may have the same but I wasn’t convinced.

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A few days before Dilan was 6 months old we started baby-led weaning. One night I put some of my chicken pasta on his highchair tray. It had been cooked in a cream sauce and he picked some up and rubbed it around his face. Immediately he came up in hives wherever the food had touched. I obviously panicked and called 111 who advised it must be an allergy. At that point I cut both dairy and soya from his diet and my own as I was breastfeeding, and his sickness completely stopped. His weight began to increase dramatically. After that Dilan came into contact once more with dairy, this time yoghurt on his arm, and hives came up immediately again. Both our paediatrician and dietician agreed with the diagnosis but requested I retrial soya which I did. I spent one day eating soya and Dilan spent the next week throwing up which confirmed the allergy for us. In fact I have a delightful video from that week of Dilan being sick right in his dad’s ear. The sickness eventually stopped and we started our journey of being dairy and soya free.

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It is an incredibly overwhelming and daunting situation to be in. Dairy hides in the craziest of places. Wine can contain dairy, ham and other meats often contain dairy and there’s even milk in some pickled onions. Soya is even worse – hiding in most bread, nearly all ‘free from dairy’ chocolate, biscuits and crisps. I had to very quickly get used to checking the labels of everything we put in our mouths. Even teething granules contain food grade lactose, which comes with a strong risk of contamination. The food shop takes three times as long while you check the labels of everything, and hunt out things you can eat. Eating out is a nightmare; putting your trust into someone else to not mess up and poison your child is seriously stressful. The eye rolls and the huffing and puffing you get from staff when you request allergen information, despite them having a legal obligation to provide it, becomes draining. But, eventually it gets easier. Label checking becomes second nature, your food shop speeds up as you learn what is and isn’t safe, and you find restaurants that you feel safe eating at. You stop missing the things you can’t have because you find decent alternatives and beyond all of that, seeing the improvements in your child makes it all worth it.

As Dilan got older things became harder in a lot of ways. Once he was walking it became more difficult to ensure he couldn’t get hold of any unsafe foods. Places like parks, soft plays and even other people’s houses became nightmares, full of what was effectively poison. We began to avoid these kinds of places because it was too stressful to deal with. Luckily friends have been incredible and Dilan has always been catered for at birthday parties and events.

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Now at age 2 Dilan is often aware of being different which is heartbreaking. He understands that milk can make him poorly so he can’t eat certain things but that’s a very big concept for a two year old to understand. Recently we were at a park surrounded by children with ice creams. We approached the ice cream van and Dilan chose a banana flavoured ice lolly which I checked for milk. Unfortunately it contained milk protein which meant he couldn’t have it (I know, milk hides in crazy places!). Although we found one that he could have he was absolutely devastated about being unable to have the one he wanted and there was nothing I could do to console him. I do worry that moments like these will become more frequent but all I can do is empathise and try to always have decent alternatives available for him.

Facebook was an incredibly valuable source of information for me in the early days, and still is. There are so many support groups on there for parents of children with CMPA including general advice, breastfeeding, weaning and groups for multiple food allergies. When I first started out on this journey other parent’s experiences were so comforting, to know that other people have been where I was and have come out the other side. After a while I picked up lots of knowledge and was able to support other mums starting out. Eventually I started my own group for mums who are breastfeeding children with CMPA and other food allergies. It’s such a supportive community; we all share in each other’s highs and support each other through the lows. The phrase “it takes a village” has never been truer than when you’re an allergy parent. The friends I have made along the way are truly, truly inspirational people who survive situations much tougher than ours, and the support of people who truly understand what you are going through and how you are feeling is essential.

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The good news about CMPA is that most children will grow out of it, and I remain hopeful that one day Dilan will be able to enjoy an ice cream at the park with the rest of his friends. He self weaned from breastfeeding at 25 months so I was able to reintroduce dairy to my diet but I still don’t eat it around him. For now we get on with dairy free life as we have done for 2 years. There are so many great alternatives out there so he really doesn’t miss out and enjoys biscuits and chocolate just as much as any other kid. Thankfully Dilan recently stopped reacting on contact to dairy so we have actually started a very slow version of the milk ladder. This means we have begun to introduce a small amount of baked milk into Dilan’s diet in order to test his tolerance and hopefully speed up the process of him outgrowing the allergy. So far he is doing really well and tolerating stage one of the ladder which is great news, especially because in the beginning its so hard to imagine that they’ll outgrow it. I’m really confident that within the next year he will progress further up the ladder but we are in no rush to do so.

USEFUL LINKS

For a full list of symptoms and some excellent links to helpful information you can visit the CMPA Support website.
For a treats list of dairy and soya free foods and a more in depth explanation of CMPA and some FAQs take a look at www.dilanandme.com/dairyfree/
If you suspect your child has CMPA and you are struggling to get medical help have a read of the NICE guidelines for CMPA and the MAP algorithm for suspected CMPA
If you are a breastfeeding mum and suspect your child has CMPA feel free to join the Breastfeeding with CMPA and Other Food Allergies – Support Group UK on Facebook.