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Parenting a child with FPIES can be so hard. First up there are the physical symptoms; vomiting often until unconsciousness, but then, as your child gets older, you have to start to teach them about FPIES, and allergies. I want to share with you how I am teaching my child about allergies. I’m not professing to be an expert, and this post is just written based on my own experiences, but I hope someone will find it helpful! My daughter is 3, so I have kept everything fairly simple, but I hope this post will give you a frame to base your own learning experiences on, and perhaps inspire some new ways to talk about allergies.
Teaching my child about allergies
Avoid calling alternative foods by their ‘normal’ name
Our daughter Daisy is 3.5 and we use the correct name for normal foods. What I mean is almond milk, for example, we previously referred to it as milk when she was a baby. This can cause confusion for children, and could even lead to your child consuming an allergy trigger unknowingly. Now that Daisy can understand us properly we use the correct terms, terms such as almond milk, oat cheese etc. Hopefully, this helps Daisy to be aware that her food is specifically tailored for her needs, and also means that if she asks an adult in the family for almond milk they will know exactly what she requires. We talk to Daisy frequently about her food, and how it is special free-from food, like free-from chocolate.
Show pictures of allergy triggers
Make sure your child is aware of what their allergy triggers look like. While many foods containing allergy triggers will not be in their whole form this can particularly help with things like tree nuts, fruit & vegetables and animal products. Showing your child photographs of what their triggers look like offers a great opportunity to talk about allergies, and allergy symptoms. With one of Daisy’s triggers being dairy I have explained that this is produced by cows (which she found disgusting..!) and that she should avoid touching cows on any farm trips.
Explain symptoms to look out for
Daisy has FPIES and so does not currently have IGE based symptoms. For Daisy, we have explained that if she begins to feel sick, very hot or unusually cold, or has a general poorly feeling that she can let us know. At 3.5 it is still unlikely that Daisy will be able to realise an FPIES episode is coming on, but she has let us know she felt sick a few times now which is a good start. Talk to your child about the specific symptoms of their own allergies and how they should report any rashes, tingling, swelling, sickness or other symptoms to an adult immediately. Recognising early onset of allergy symptoms presents adults around your child with the chance to act quickly and minimise any issues.
Be calm and avoid passing on anxieties
This particular tip is the one that I’ve needed to work on the most myself. At times, especially if it seems like Daisy may be sick, or is feeling unwell, I’ve let my anxiety take over. Since reading the book ‘Living With Allergies‘ I have been coping much better. I have taken steps to manage my own anxiety over Daisy’s allergies and have been able to calmly ask her questions and present myself to her. When explaining allergies to Daisy I try to remain matter of fact and avoid using hypothetical scenarios that are unlikely to happen to her.
Explain the need to ask about ingredients
It is really important to ask your child to ask about ingredients and encourage them to be their own advocate. My daughter is a little young for this yet, but I always observe her watching me checking ingredients when we are out shopping. I explain that we are looking for Daisy’s allergens to make sure the food we are purchasing is safe for her to eat. Also, on rare occasions when we eat out I explain to Daisy that we are going to read the allergy menu, or folder, to check for safe food for her to eat. If there are no safe foods I explain this to her and produce a snack box that I always have on hand.
I’m always careful to speak positively when talking about the need to check ingredients. I never imply it is a chore or something that I don’t enjoy doing. Also, I explain, every time, that we are checking the food is safe for Daisy to eat and won’t see her suffer an FPIES allergy reaction.
Now that Daisy is becoming more interested in food, and how food is made, we have started baking together more. Our bakes are often simple, thinks like gluten-free jam drops, or a gluten-free cornflake tart, but I keep Daisy involved. While we are baking I talk about preparing the surfaces, and ensuring we can bake together and keep the food free of allergens. We practice looking at packaging together, to check the ingredients, and to remind Daisy that we need to check every time we use a packaged item. While I could explain that we only need to check when we buy the item I don’t want to complicate things, or open Daisy up to the risk of not checking an item in the cupboard at home and consuming an allergen.
Use clear terminology
When talking about allergies with your child ensure that you’re using clear terminology. Whether you’re talking about allergy triggers, epi-pens, antihistamines or anything else avoid using terminology that you’ve made up. Your child needs to be aware of the correct name for anything that may help them, should they need to ask an adult for assistance.
Keep it age-appropriate
As Daisy is only 3.5 I have only briefly touched on other types of allergies that aren’t currently applicable to our family, such as IGE allergies. I have briefly spoken about how people can die from allergic reactions, which is why it is important to always check all foods and not to share our food with others without checking with their parents. Daisy does not know much about death, besides that, it means you are ‘gone forever’, and I think this is possibly a little inappropriate for her age, but it is important to begin the discussion while they are young and easily impressionable.
If you have an older child then consider the age-appropriateness of the language that you use, and any explanations you make. As Daisy attends allergy clinics and goes to Nursery with other children with allergies I want her to be aware of various allergies from a young age. Also, allergies are pretty common now and I think all children should be aware of. I teach Daisy that if she feels unwell, or thinks one of her friends may be unwell, that she should always speak to a parent or other grown-up, and she should not be worried about speaking to them. Daisy is a little shy in group situations so we are working on this by visiting busy places more frequently.
Allow questions – my number 1 tip for teaching my child about allergies!
I always encourage my daughter to share any questions she may have with me. This is probably my most important tip for teaching my child about allergies. Sometimes Daisy will surprise me with the questions that she asks, and then we do a little research together. Other times I am able to instantly reassure Daisy, which is nice.
I hope me explaining how I am teaching my child about allergies has been helpful. If you’ve got any questions about FPIES, or allergies, then please do reach out on Instagram.
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