What it’s like to… raise a child with severe allergies

We ask the mother of a child with severe, life-threatening allergies – to nuts, egg, dairy, sesame, chickpeas, tomatoes, cats, dogs and dust mites – how it affects day-to-day life. And what the future looks like for her six-year-old daughter…

My daughter has had issues since birth, mainly eczema and blotchy skin. She had a couple of instances of all over hives as a baby but no known cause. When she was 15 months old, I have her a peanut butter sandwich. She took a small bite and then immediately had swollen lips, a rash head to toe (that was itchy), hives, streaming nose and eyes, hot all over and she was screaming. She also projectile vomited about an hour later.

I took her to the doctors who sent her for RAST blood tests for almonds, Brazil nuts, hazelnuts and peanuts and it came back positive to all. She continued having issues until the GP agreed for more blood tests and we discovered she was also allergic to egg, dairy, sesame, chickpea, tomato, cats, dogs and dust mites. She is now regularly seen by the allergist at Southampton General who is amazing.

I do not suffer from any allergies but her father is severely allergic to bee venom. With regards to it being genetic, I believe this is one factor in a long line of variables. Allergists across the world don’t have a definitive answer either. There have been many theories thrown about – antibiotic use, hygiene hypothesis, genetics, abstinence from eating allergenic foods.

Flying takes a lot of planning. I am regularly up at 11pm baking for the next day. I can’t leave the house without food or her emergency medicine

It is a possibility that under or over exposure could cause an allergy. For example with peanuts it’s been shown that if a baby doesn’t eat them but has eczema and the proteins get in their system through broken skin they can be sensitised and later allergic. If the baby eats the food, as it has had a traditional route in the body doesn’t think it’s an enemy and is fine.

Her allergies are peanuts, tree nuts, dairy, egg, chickpea, raw tomato, kiwi, sesame, cats, dogs, dust mites. She has had previous anaphylaxis to peanuts and dairy, and all of her allergies are severe. Unfortunately the true nature of allergy is unpredictable. You can have a mild reaction one day and anaphylaxis another. It’s important to always be prepared and to carry your emergency medication.

When it comes to touching/eating allergens – it depends on which one it is. We abstain so well it’s hard to say what would happen. Previous reactions have included a cough that gets worse very quickly indicating her airways are irritated and swelling, wheeziness, and the symptoms explained above.

At birthday parties she can’t have most of the party food and especially not cake

Allergy affects everything you do so adapting family life has at times been difficult. Food especially is a main focal point for a lot of things – birthdays, family get togethers, Easter, Christmas (the list goes on…). Eating out as a family becomes interesting as I have to contact them prior, read their allergen information, speak to the manager and chef and even then it could all be in vain as something will be unsafe.

I spend a lot of time contacting manufacturers as food labels don’t always tell you the whole story. She has a care plan for school, they are all trained to use adrenaline in an emergency. All my family and friends get schooled in adrenaline use and how to make safe food etc.

At birthday parties she can’t have most of the party food and especially not cake. I provide her food for most parties, some of my close friends make the whole party safe but it’s difficult when you don’t really know the other parent to get the point across.

Flying takes a lot of planning. I am regularly up at 11pm baking for the next day. I can’t leave the house without food or her emergency medicine. I’m now teaching her how to read labels; how to keep herself safe. When shopping I have to read every label every time and unless it’s a trusted manufacturer I have to call/email them to get a definitive answer.

There is always hope she will grow out of her allergies or at least become less sensitive. I have been told that she could grow out of some but her nut allergy is probably for life. I will always hope though! There is lots of exciting research going on so maybe even a cure will emerge, who knows.

Allergy is widely misunderstood. People can think we are being picky or precious

My daughter’s childhood has been affected in the ways I have detailed, it really does take over everyday life. She knows she has allergies and certain things need to happen to keep her safe. It can be difficult for children and some allergic children get bullied. I feel as allergy parents our biggest job is empowering our children to look after themselves and to be able to speak up.

Anyone who is newly diagnosed, seek advice and help. It can be a scary and lonely road. It will get better and easier over time. Medical advice should always be from a qualified person however you can get emotional help and support from organisations such as Anaphylaxis Campaign and Allergy UK. I have found most of my support through Facebook and Twitter – knowing there are other people going through what you are helps so much.

Allergy is widely misunderstood. People can think we are being picky or precious. Unfortunately allergies can kill and are unpredictable. The only safety net is complete abstinence and being thorough about the precautions you take. Sometimes, though, no matter what action you take to prevent a reaction it will still happen, and this can be fatal even with emergency medication. We didn’t ask for this condition but it is one we have to live with and make the best of. A little understanding goes a long way.

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