Like more and more children these days, my little boy Zach, has multiple food allergies. That means that some foods make him feel poorly, irritable and itchy, while others have more serious implications. He has been allergic from birth, reacting through my breast milk. When I’m asked how we manage his food allergies on a day-to-day basis as a family, I generally reply that it’s easy. The difficult bit was getting a diagnosis and the early months when we had no idea what was wrong with our baby. There was little support and knowledge available to help us in the early months. However, that’s actually only half the story, the half that I want to be true and want to believe.
In reality, it’s a bit of a mine field. I have many worries about every day mundane activities and have a constant struggle to keep my anxieties away from my little boy.
In my opinion, food allergies are bizarre. Zach is full of life, strong and energetic. He sleeps well, eats well and has loads of friends. He is not withdrawn, pale, thin or tired, as you may imagine someone whose life could be endangered by food. So on the surface, it’s like a ‘pretend’ problem. Like so many sufferers of unseen illness, that adds to the challenge. Socially I have to overcome the thoughts that other parents may think that I’m a little bit crazy and I have to ignore the nagging criticisms about being over protective. That annoying phrase, the ‘helicopter mum’ is actually how I often behave because in reality that is what I am and what I have to be.
There are big practical challenges. Everything requires planning. We can never leave the house without food and medication. In the home, food is stored and prepared separately, Zach’s food first. He has his own cupboard for snacks and treats. We wash cutlery and dishes on a hot wash and generally try not to share. We clean everything and wash our hands before and after food. We keep an adrenaline auto-injector (our make is Epipen) upstairs and downstairs, always to hand. We try to do allergy free family meals sometimes and other times he is content with his own version of the meal.
Outside the home, children’s parties are one of the biggest challenges. It is so important that Zach is able to participate fully in the party while being kept safe so I generally choose to cater for him and just take similar food to the party food, having contacted the host in advance. Some hosts will offer to help and provide food for Zach, and that is extremely kind, but almost too much of a challenge. It’s very difficulty to provide dairy free, wheat free and egg free party food and cake that is suitable for him as well as other treats. Often I accept the help but always will bring my own food just as a back up in case. I have found that as long as there is one thing that Zach can have from the party food table, he is happy. So an orange juice will do or certain types of plain crisps. I always do a quick check of the goody bag at the end and replace treats that need replacing. I generally have a pocket of allergen free chocolate buttons and sweets on hand to replace anything. I always take a cupcake for him that I have made at home. All the time I try to be in the background, providing alternative food for Zach without making a big deal, hoping to quietly give him the confidence he needs for one day when he will go to parties without me. So far children have not commented about why he doesn’t eat the same food as everyone else and when he is asked, I am sure or at least I hope that he will know what to say.
In all things, I try to get a balance and I do now know that with planning and care it will be ok. Zach started preschool when he was 3. The members of staff were really helpful and have adjusted birthday celebrations, cooking classes and snack time so that he can be involved. While I don’t ever go far from my phone when he is there, just on case I am needed, there has never been a bad incident so far and they do keep him safe.
As Zach gets older, teaching him about food and safety becomes more and more vital. He is due to go to school this September and life is taking him away from my watchful eye. He therefore needs the knowledge and confidence to be safe. We talk to Zach about his allergies through cooking, food shopping and eating out. As there are only a few shop bought alternatives to certain foods like cake, cooking together is a great way of talking about food, the foods he can have, those he can’t, why he can’t and the alternatives. He often practises at home and with grandparents by asking if something is gluten free or if it has egg in it. There are a few excellent children’s books available as well which talk about safe foods. In the supermarket aisle, we look on packets for the words ‘egg’, ‘milk’, ‘gluten’ and so on and look for alternatives. He loves the ‘free from’ sections and knows that there he can eat a few more things.
Eating out is a bit of a gamble. We have learnt, through good and bad experiences, about the restaurants that we can go to. We use eating out as another way to talk to Zach and make him aware of what we ask the waiter and chef about before we eat anything. If he wants to he asks the waiter if the food is OK for him. Generally though we always take packed food, and always his medication (antihistamine and adrenaline auto-injector). Many restaurants are seeking education for their staff to ensure they have knowledge about cross contamination as well as allergens.
Previous reactions also allow us to talk to Zach about his allergies. Sometimes he gets fed up and tells me he is going to eat something. Rather than tell him ‘no’, which will never work in the long run, I say ‘OK, but it will make you poorly’ and then we talk about the episode when he eat a bit of cake with egg in it by mistake and what happened to him. He listens and remembers. He isn’t afraid but he understands that there are consequences for him and he doesn’t want to get poorly or go to hospital. I am yet to talk to him about the adrenaline auto-injector in much detail, mainly because I don’t know how to phrase it. He does know that he has one and that we carry it with us, but he doesn’t know exactly what it does and when it would be used. Zach, like every other 4 years old, asks lots of questions and as yet I’m not confident in my own ability to talk about how poorly he would feel and the use of the auto-injector without frightening him. The time will come though and will have to long before he goes to school.
Now that Zach is 4, I have got through the confusion of food allergies and we manage day to day very well. I am very aware though of the future. Zach is approaching the age of the play date, of going to friend’s houses and being left there to play and even of sleepovers, but how should I tackle them? Is it extreme to teach each parent how to use the adrenaline auto-injector? Is it enough to just provide his own food and direction about which other foods to avoid? Again, trust is a huge part of living with food allergies and trust of relative strangers, of parents of your child’s friend is tough.
In general, I try to present Zach’s allergies as no big deal to him and as a very big deal to adults around him. Zach, like most children, just accepts difference and that is what he is doing. He has had times when he has felt excluded and sad because he can’t participate or eat some thing that others can, but generally as long as I am aware, there is always an alternate that is acceptable to him. I also feel that actually difference, independence, exclusion and difficulties are a part of life that children have to learn to manage for themselves. For Zach, as with other children with food allergies, this knowledge has come early but I don’t see it as a bad thing because he has support around him. I have a close family and network of friends who will always, through their own choices, support and consider my son. Zach has great friends who are also learning about his allergies with him and it’s fascinating to watch them occasionally talking to each other about the different types of chocolate buttons and who can eat what. My friends now all make allergy free cakes for their children’s parties and that never fails to show me how kind people are.
Zach has had food allergies for 4 years and we always hope that he will outgrow them. For me as his mum, my greatest learning has been learning about what actually matters. I have realised that it is not the food and the practicalities that are difficult for Zach. They are just irritating and at times difficult for me. It is the inclusion and the balance that matters. Providing Zach with self-confidence in any way that I can is what really matters more than anything. I am immensely grateful to my friends and family who help so much on a daily basis as I strive to show Zach that where there are differences and difficulties, there is always an alternative. I have found that it is not about making everything perfect for Zach, but about showing him that it is OK. The challenges that lie ahead of us, I am confident can be overcome, as Zach has overcome so much already. The important lessons, that he has had to learn early in life, will help him continue to be a happy and confident boy.
By Charlotte Muquit, one of the authors of The Allergy-Free Baby and Toddler Book