12 things parents of allergy children really want everyone to know

Little boy eating from a box of peanuts.

We spoke to parents of children with allergies - and they want everyone to know just how serious and debilitating it can be when your child suffers allergic reactions to food.

Parenting a child with food allergies is a lot more than a slight fear they might develop a rash, or suffer mild breathing difficulties if they accidentally chow down on something containing nuts. It can involve living in a frightening, debilitating bubble of anxiety, with the unknown around every corner. Most people aren't aware of the pressures that come with caring for a child with life-threatening allergies. 

It seems absolutely wild that when a plane full of people are asked not to eat or bring nuts onto the flight because a peanut allergy sufferer is on board, they believe their right to munch on dry roasts trumps somebody's actual right to be alive. Because infuriating throw-away comments about the inconvenience of not being able to snack on their favourite foods while soaring through the air instead of waiting to do it when it's safe for all involved, conveys not only a bewildering sense of entitlement, but also a lack of knowledge about the realities of having an allergy.

This is why we spoke to allergy parents and families, to find out what they'd really like everyone to know about this altered state of living. We also sought the opinion of Professor Adam Fox, consultant paediatric allergist at St Thomas' Hospital in London. We asked his view on why it's vital the public are educated about the serious impact of allergies, and he tells us "Having a food allergy can have a major impact on quality of life, not just on the effected child but the whole family. If a family member has a food allergy then shopping takes much longer, is more expensive and simple daily activities such as visiting friends, eating out, arranging holidays can become extremely stressful"

He adds "These families live with a continuous, pervasive anxiety knowing that at any time something catastrophic may happen. Allergy awareness can make a real difference to this and my patients continually tell me of lovely examples of how thoughtfulness and inclusivity have really lifted their burden. The better the understanding of allergy that wider society has, especially those close to the people who suffer with the allergies, the greater the impact will be."

12 things allergy parents really want everyone to know

1. "It’s not a choice, a fad, or an 'intolerance'. You can’t turn it off - it’s 24/7, 365 days a year, and you can’t ever relax about it. It’s also not 'fussy eating' and we’re not being 'dramatic' when we insist on ingredients and cross contamination being checked. Being made to feel like an inconvenience to ensure you stay alive can feel humiliating."
   
2. "I wish people considered the cross contamination part more - you don’t have to ‘eat’ the allergy food - a scrape of mayo, a crumb of a biscuit or residue of a peanut can set off allergies. This is why I need everyone to be more considerate of handwashing and cleaning surfaces. Cross contamination from poor hygiene control or lack of knowledge is the biggest risk to my child who has anaphylaxis."
   
3. "Free-from products can be twice the price. The additional cost of a special diet is something a lot of people won't know about. And it's not just food, we also have to consider the cosmetics we use as parents as sweet almond oil appears in so many. Even junk modelling at school can be a problem - my nut allergic child came home with a creation made from a crispy nut cereal packet."
   
4. "An Epipen is not like taking a paracetamol. It’s not just about taking it and you'll be better immediately. Often, they are only there to buy you time to get to a hospital which will then involve a minimum of an eight hour stay. Children have died from anaphylaxis even after having an Epipen."
   
5. "Eliminate the food, not the child. While safety is the most important thing, inclusion is a close second. So don’t exclude our kids, just speak to the parents and they’ll know how to or make it safe."
   
6. "As allergy parents we are not OTT, dramatic or difficult, we are simply safeguarding our children the best we know howThe anxiety and stress that comes with caring for an allergy child is so hard to deal with. Having to plan just simple trips out is mentally exhausting. The allergies have an impact on everyone around the sufferer, the sleepless nights we parents have overthinking and trying to plan a fun day to keep our allergy child safe are hard for others to understand. ."
   
7. "Restaurants need to know...that if we have a positive experience with a food outlet then they are more likely to have a customer for life. If we have a negative experience then they will loose customer for life."
   
8. "'May contain' is not a legal requirement and also a minefield. It can feel as if that’s over used by both manufacturers and restaurants more to cover their backsides. Also how some people think 'may contain' is ok - would you eat something if it said may contain poison?"
   
9. "I wish others knew how much it dictates your life….where you go on holiday, where you live, where your child goes to school. People with allergies deserve a life too. What for others are pleasures, such as flights, holidays to new places, and eating out, can be anxiety ridden for those with allergies. Our whole lives are a process of risk assessment."
   
10. "Poorly controlled eczema can lead to the development of allergies - I wish we'd known this as I feel like my child’s allergies could have been prevented. GP’s are so overwhelmed or reluctant to make referrals, resulting in so many children ending up with lifelong conditions. If a parent whose child has eczema is aware of this implication, they could push harder for treatment and possibly prevent a life of allergy difficulties."
    
11. "The worry of flying cannot be reiterated enough. No matter who with or where, flying is terrifying. The seemingly many people who can’t cope on a flight without a peanut, or whatever the allergen is and make their unhappiness quite clear, is striking. Nut proteins can live on surfaces for months if not cleaned so even if a flight is nut free, the risk is still there."
    
12. "The Covid pandemic was the closest most non-allergic people will get to how it feels to have an allergy - an invisible threat everywhere you go - not knowing if you will come into contact and if it will kill you. Medicine hopefully will help if you are ill but it may not. Except the pandemic has passed and most allergies don’t. Those with allergies are on constant alert throughout their lives."

Professor Adam Fox concludes by adding "Allergic reactions are typically caused by a relatively small groups of foods – milk, egg, sesame, peanut, treenuts and seafood. More commonly these days, newer allergens such as legumes including peas and lentils are responsible.

Reactions are usually easy to spot – immediate symptoms of itchiness around the mouth, swelling and hives. If you suspect your child has an allergy you should pick this up with your GP in order to arrange testing. There is a national guideline for GPs to support their decision making around this and this includes a parent’s guide for those seeking more information."

For more articles like this, we spoke to co-parents about their biggest challenges, and asked teens what they wish their parents had done differently. On a lighter note, tweens to share their parents' most annoying habit and rules, and their honest answers are very entertaining.