It can be difficult having a child with any sort of food allergy, but since cow's milk is so ubiquitous in the Western diet, it can be especially challenging - not to mention coping with Christmas, Easter and Birthday parties.
To reiterate how difficult diagnosing and living with CMA can be, I spoke to Dr Smith, who has two sons, Alex and Samuel. (I've name changed as she wanted to preserve her family's anonymity). She talks about coping with a child with a cow's milk allergy that didn't resolve until her son was 4.
Tell me about yourself?
I have two boys, Alex who is 4, and Samuel a newborn. Alex has cow's milk allergy, amongst others. However, he has recently outgrown it, and we went for a Mr Whippy to celebrate!
What symptoms did your son have?
Alex was breastfed so we had no idea he was allergic to cow’s milk until he tried some baby rice with formula mixed in at almost 6 months old. He had only licked the spoon a few times before he started fussing and crying. At first I thought he didn’t like the unfamiliar taste but after cleaning his face I realised that under all that cereal he had hives all around his mouth. The hives were spreading rapidly in front of my eyes and I knew he was having an allergic reaction. I rang my husband who was working close by who came to collect us. We lived very close to the local hospital and were at the Emergency Department within 10-15 minutes of me noticing the rash.
Alex was crying all the while so my logical mind knew that his breathing was fine at that point but the medical side of me was really worried about the possibility of anaphylaxis. By the time we got to the ED his entire body was covered with hives and his eyes had started to swell. The triage nurse took one look at him and we were rushed through to resus. He was given medications and luckily responded well to them. Within an hour the red, blotchy, screaming baby I brought in was cooing at the ED staff.
How quickly did you get a diagnosis?
We were kept for observation for a few hours, in case he had a recurrence of the allergy when the medication wore off. During this time we were seen by a paediatrician who advised us that his reaction was likely due to a milk allergy (I had brought the cereal packet along). In our case, Alex’s diagnosis was pretty straight forward in that he had a classical allergic reaction which occurred within minutes of ingesting cow’s milk. We were given some piriton, told to avoid any foods containing dairy and discharged. No follow up was mentioned although we were told to see our GP for hydrolysed formula.
At that point I had so many questions and no one really to answer them. I did a lot of reading and research. Armed with new information and a plan, we saw our GP and got a referral for Alex to be seen by allergy services and a dietician. Skin prick testing later confirmed an allergy to milk and we also saw a dietician who gave us guidance on replacement milks and dairy free weaning.
Paediatric allergy services vary according to where you are in the country. We had to travel quite a distance for Alex’s initial diagnosis and was seen by an adult immunologist as there wasn’t a dedicated allergy service for children. We have since moved to a different county and he is under the care of a fantastic paediatric allergy team.
What has been the hardest part of going dairy free?
The lack of spontaneity. In the early days we couldn’t eat out without planning. We had to take a supply of food and milk for Alex when we travelled abroad. I remember packing Weetabix, a food flask and a crazy amount of Alpro for a two week trip to the USA. Holidays had to be self catering and the airlines can never guarantee a safe meal so we always brought our own. Alex did go on to develop other food allergies apart from cow’s milk so some of the challenges we faced were unique to our situation.
The other aspect that I found difficult was when Alex missed out on things because of his allergies. It was easier when Alex was a baby, as his diet was very much within my control. We were also very lucky to have found a fantastic nursery for him where his allergies were very well catered for. It was when he started attending birthday parties that things became a bit more difficult, as he often couldn’t have the birthday cake and a lot of the party food laid out. We would bring him a party packed lunch and a couple of dairy free cupcakes decorated with toppers of his favourite cartoon characters. The nursery has a supply of dairy free chocolate lollies for him in the event one of his little friends brought in treats to share.
How did you manage going out to eat?
With a lot of planning! It has gotten a lot easier recently with the new food allergen laws introduced in December 2014. Prior to that, it was a bit hit and miss which restaurants had information on allergens. Some had a folder the size of the phone directory and some would give you blank stares.
I initially stuck to places where I could find an allergen menu online, then cross checked with the restaurant on arrival. If in doubt, I always brought food for Alex. If the restaurant could cater for him then great, if not, he won’t go hungry. Some places are actually relieved that he has his own food, as catering for multiple allergies can be tricky. We have a food flask for hot food and I would fill it with something I know he likes such as pasta.
Chain restaurants like Nando’s, Pizza Express and Weatherspoons are very good with food allergies. Pizza Express can do pizzas without cheese and they even have a dairy free raspberry sorbet for dessert. We live in the Midlands and Le Bistrot Pierre were fantastic on a recent visit. Chinese, Thai and Vietnamese food can be good options as dairy products are rarely used in these cuisines. Do check with the individual restaurants though.
When travelling anywhere I would usually do a quick online search for suitable eateries at our destination before leaving. When trying a new restaurant it is sometimes helpful to phone in advance to determine if they would be confident catering for allergies. When visiting a new restaurant, I would usually make a judgement call on whether we would let Alex try the food there based on how the restaurant staff respond when we alert them about his allergies. If they took it in their stride and can confidently tell us they will alert the chef etc we usually went ahead with the order. If they looked uncertain we would cancel the order.
Despite his allergies, we do eat out a fair bit with Alex as we feel that it is important for him to be able to experience the social aspects of dining out.
How has it been reintroducing dairy?
As Alex got older, he started tolerating some forms of dairy. Initially I introduced milk in baked products like bread and cakes, and then gradually cheese, yoghurt, ice cream and finally raw milk (standard blue top milk, not the unpasteurised stuff!). I baked at home a lot so that I knew exactly what went in the products. I found that I had to make sure things like cakes were thoroughly baked so more on the dry side or he would get a rash with them.
Reactions were sometimes dependent on how much dairy he's eaten. So half a small pot of fromage frais would be fine but a full pot would bring on a rash. If he was ill or run down then he would tolerate even less dairy before reacting. We found it best to let him feed himself as he would stop if he found it uncomfortable. As he got older and more verbal he could tell us if his mouth felt uncomfortable eating something before any outward signs appear.
From reintroduction to him outgrowing the allergy took about 3 years.
Do you have any top tips for parents of a CMA child?
It gets easier. It’s a whole new world that you are navigating but one that will soon become familiar.
Cooking from scratch at home is probably easiest for a dairy free diet. Free from products have come a long way in the last few years and are much more widely available. Goodnessdirect.co.uk is an online grocery store that stocks a lot of the harder to find dairy free products.
I found it handy to always have dairy free snacks and treats when out and about or visiting other people. It’s not a big deal during the baby stage but once they are older and they will start noticing that they can’t have things other children take for granted. A plain digestive sometimes doesn’t quite cut it when everyone else is having chocolate Hobnobs. Jammy dodgers, bourbon creams and party rings are biscuits that are surprisingly dairy free.
Most supermarkets now stock dairy free chocolate. Kinnerton and Choices do dairy free Easter and Christmas chocolates. Moo Free do a dairy free advent calendar and you can order one from Kinnerton (check their website) that is also nut free.
All major supermarkets stock Swedish Glace which is a soya based ice cream. It is really rather nice and also fat free. Holland and Barrett also stock some other brands of dairy free ice cream and yoghurts not available in supermarkets.
There is an allergy forum on Mumsnet that I came across when Alex was first diagnosed that has since been invaluable in providing practical advice and support. When Alex had his first reaction it was another medical mum on there who pointed me in the right direction regarding getting a diagnosis.