Today’s mum sharing her family’s story is Alison, who has two sons. Her eldest son (A) is now 5 and allergic to nuts. Her youngest (T) is allergic to peas and white beans, and also has to avoid chickpeas and lentils. Both have suffered anaphylactic reactions and each has his own EpiPen. Here Alison talks about how her sons’ allergies were discovered, their experiences of reactions and how they manage day-to-day with school, nursery and playdates – Louise
Discovering A’s allergies: peanuts, nuts and eggs
A, who is now five, was diagnosed when he was around two-years-old with egg and nut allergy. We had taken him for tests following several increasingly worsening reactions to egg which we just hadn’t registered as an allergic reaction at the time (having no experience at that stage!). It wasn’t until it culminated in a serious reaction one day after eating home-made chocolate mousse (containing raw egg) where his mouth swelled and his breathing was restricted, that we realised there was a real problem.
We took him to the GP, had him referred, had the tests done and they showed a clear reaction to egg but an even more severe reaction to all nuts. This was a complete surprise to me, not least because I knew I had given him both peanut butter on toast and crunchy nut cornflakes when he was younger and he’d had no reaction. In all honesty I was a bit sceptical about the nut diagnosis – I knew the skin prick tests could give “false positives” i.e. allergens that can be tolerated when ingested may not be tolerated when used in skin tests but nevertheless we avoided nuts anyway, though at that time didn’t worry too much about “may contain” etc.
We also avoided egg unless it had been highly processed; he could tolerate it in cakes / biscuits etc but not in its pure form. (Luckily, he has now outgrown the egg allergy).
We were prescribed an EpiPen because of A’s difficulties breathing during a reaction.
A few months later, whilst I was out of the room, A pinched a Guylian chocolate and as I walked back in, I saw him bite the tiniest piece off it. Within seconds, he spat it out, said his mouth felt funny, was violently sick, covered in hives, eyes watering, face puffy, mouth swollen and coughing. You would not believe how tiny the piece of chocolate was that he’d had; that’s when I knew that the nut allergy was real. We gave him Piriton, which controlled the reaction without us needing to use the EpiPen.
Since then we have had two more reactions: once when he ate a sandwich at a party which he thought was jam but turned out to be Nutella, and once when he was given a chocolate bar which looked exactly like an Aero, same packaging etc, but was Lidl’s own brand which contains hazelnut – hazelnut is his worst allergen. Writing that, I can’t believe either of those situations occurred when I consider how careful (to the point of neurotic) I am now – those situations just would never be allowed to happen – but I think with allergies, it’s very much a case of “you live and learn”.
Pinpointing T’s allergies: peas and white beans
T’s story is slightly different. He is now three and we were told when I was pregnant that there was a 75% chance of him being affected by allergies (my husband, myself and A all have eczema, A and I have hayfever, my husband is allergic to fish, I’m allergic to animal fur, detergents, grass … T didn’t stand a chance really!). We always avoided nuts with T, we didn’t have them in the house anyway, he didn’t need them so it was easy, however he had a really varied diet otherwise and was a great eater. When he was about a year old, he started reacting to meals in the same way A used to: hives / rash on his face, vomiting, coughing, struggling to breathe, barking sea-lion cough. It was difficult though as he also had (still has) reflux so was sick five or six times a week anyway and it was really hard to tell what was a reaction and what wasn’t.
We went through months of tests, trying to pin down what he was reacting to: we thought it was tomato as he would react to baked beans and some pasta sauces; we thought it was something in gravy as he would react to roast dinners; we thought it was fish as he would react to fishfingers and chips and peas… every test came back negative. Then one evening we had steak, mashed potato and peas for dinner. His reaction was so severe we called 999: he couldn’t breathe, he was taking in the tiniest amount of air and struggling to get it out again and had that dry, barking cough. We rang 999 initially to see whether we could give him more ventolin than we already had (they had prescribed it in case the reactions were actually asthma attacks) but as soon as the controller heard him coughing, they sent an ambulance. We’d also given him piriton (I was scared at that point to use A’s EpiPen on him as still didn’t know whether it was an allergic reaction), and fortunately, the Piriton worked – by the time the ambulance got there, the reaction was subsiding.
I rang the Consultant’s secretary the next day and said “I know this sounds ridiculous but please can we test for peas?” – it was the only thing I could think of in the meal that he could have reacted to. So we had the tests and lo and behold, he has a severe allergy to peas and white beans – we also have to avoid chickpeas and lentils as they contain the same protein so are likely to cause a reaction.
Since we found out what T was allergic to, we haven’t had another major reaction, though he has had minor reactions to foods we would never thought would be an issue: hotdog sausages, fruit sweets, pasta sauce, all of which have contained pea starch which is used a natural additive in more foods than you would think. We have to check everything now for him as well as A.
Teaching the boys about food labels
A has not had a reaction since the chocolate bar – I am really fastidious and I don’t risk “may contains” with him – mainly because he is starting to read food labels himself and whilst I can make a judgement as to how risky something is (the orange juice example on your Facebook page, for example), he can’t make that risk assessment, so my message to him, especially as he spends more time away from me at friends’ houses etc, has to be “if it may contain nuts, he can’t have it”. It’s a tough one, it wipes out a lot of options, but it’s the only way to keep him safe as he becomes more independent – until he reaches the age where he starts to rebel and make his own mind up as to the risk!
Nurseries and schools
We have had mixed experiences from the institutions the boys are involved with: their first nursery did not take the situation seriously or in fact (I think) believe there was even an issue. I had to take the letter from the hospital in to make them understand that they really had to take active steps to ensure that the boys were safe at meal times. We also had a huge issue over the provision of EpiPen training for the staff and who was going to pay for it – at one point, they were asking me to pay the £75 fee the hospital were going to charge to provide the training!
Happily, the nursery / out of school club we now use are brilliant – all staff are allergy / EpiPen trained and they go to great lengths to ensure the boys never come across their allergens when they are in the setting.
A’s school have been equally good, the staff undertook training at the beginning of the year and have frequently called me during the year to check whether A can take part in certain activities (baking etc).
As the boys become more independent…
A has always been very aware of his allergy and will always, always ask about nuts if someone offers him food (even if it’s me or my husband!) and he will refuse to eat it if in any doubt. I trust him completely when he goes places without me, but I still make sure his friends’ parents are trained in using the EpiPen and understand what they are looking for in a reaction, just in case.
T is not quite there yet: if you ask him what he is allergic to, he can tell you, and he will point to peas and beans in the supermarket and say he is allergic to them, but he will not remember how it feels to have a reaction, I don’t think, so it’s more of an abstract concept for him.
I bought them both a bracelet from the Allergy Buddies website, which includes a disc saying “Epi pen in my bag”: they don’t wear them all the time but do wear them at parties (even if I am with them) and when with their grandparents or at friends’ houses, just as a reminder really, in case they have a reaction and panic sets in!
Thank you for featuring our story: writing this has actually made me realise what a massive part of your life food allergies become!
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Thank you so much, Alison, for sharing your family’s story. It’s brilliant to hear how trustworthy A is about his nut allergy – I hope my son is the same way when he’s 5! Reading your story has also made me appreciate that peanut and nuts are in the “top 14” allergens and must be declared on the food label. That must be very hard, trying to figure out whether a food contains pea starch. Thanks again, Louise