For us, as for all parents, our children’s initial diagnosis of life-threatening food allergies felt pretty overwhelming. It was at the time difficult to comprehend some of the challenges that lay ahead. There was very little practical information on hand, limited understanding in the community on how to live well with life threatening food allergies and certainly not a lot to guide us. With the help of medical specialists, many books (often sparse on practical advice) and the internet, we learnt as much as we could about food anaphylaxis, how to recognise symptoms of a reaction and how those symptoms presented quite differently for each of our children. All too soon we discovered there was not much available to help or guide us through everyday situations. How could we ensure we had covered all our bases? How would we ensure that we had thought of all the questions to ask and taken all the necessary precautions?
As each new experience arose, we would spend hours on end creating to-do lists, making countless notes, checking and rechecking everything, communicating our children’s specific needs, reviewing how we could improve for the next time and then start all over again. A simple trip to buy groceries would entail scrutinising all names and codes on every label. Even though food labelling now seems more straightforward, we still spend a great deal of time thoroughly checking every ingredient on every food label, every time.
Looking back, we now realise how challenging those first few years were. How planned and scripted our lives had become! Even thinking about a simple outing began with preparing enough ‘safe’ food for our children and ensuring that the bags containing their medication and EpiPens were always on hand. This ‘drill’ became, and still is, an integral part of our life.
Another defining moment for our families was starting daycare, and then school. As the years progressed, the start of each school year would present different challenges as some of the schools we dealt with had varying levels of awareness, education and experience in dealing with food anaphylaxis.
Then, in secondary school, we had to up the pace to yet another level and face the prospect of remote school camps, the most nerve-wracking experience, requiring even more planning, organisation, countless briefing sessions and of course hours of cooking, packing and labelling foods and snacks for our children to take with them.
Our children are now young capable teenagers who directly communicate with their teachers and often advocate for themselves. They discuss with us how to deal with their allergies when they go out, whether to a sporting event, social gathering or when going to a friend’s house. We are grateful for those conversations as they reassure us that despite occasionally resenting their allergy restrictions, they understand that they always need to stay vigilant.
Living with life-threatening food allergies is challenging, yet it has unexpectedly been empowering for our children in many ways. It has vastly increased their knowledge of nutrition and appreciation for wholesome fresh foods. It has given them respect, understanding and empathy for others living with any type of restriction. It has helped them appreciate and enjoy the simplest experiences in life. For them, discovering a new ‘safe’ food is an opportunity for celebration! The wins along the way have been exciting, offering new taste sensations, more food options and greater flexibility in their lives. In the last few years, Isabelle has outgrown her milk and egg allergies, Michel has outgrown his egg allergy and Sebastien is well on the way to outgrowing his egg allergy. Seb and Michel are also now able to enjoy lots and lots of almonds and walnuts! We hope that further successful ‘in-hospital food challenges’ are on the horizon.
Over the years, we have worked closely with childcare workers, different primary and secondary schools, teachers, coaches and camp specialists. There is also music, dancing, debating, and a myriad of sports that our children enthusiastically throw themselves (and us) into! Careful planning is the key and, as any parent or carer of a food allergic child knows, ‘the devil is in the detail’, and we continue to learn that each day as our children grow and come across new situations.
We hope that you, your family, friends or anyone who cares for a child with severe food allergies, will find our blog helpful. We would love to hear from you and look forward to you joining our AllergyLogic community.