Coping with a diagnosis of multiple food allergies
By Rebecca Wilcox
Rebecca knew nothing about allergies before she had children, so discovering her son had multiple food allergies was a huge shock. Here, she shares the story of her journey from diagnosis and desperation to feeling more calm and confident, calmer and more confident and shares her top tips too.
When I met my husband, I saw so many wonderful things in him – his personality, his intellect and his gorgeously thick hair (hair means a lot when you have rubbish fine strands that disappear in grease like me). Wonderful, I thought, our children will inherit some of those enviable traits. Along with my better attributes. Hopefully.
So, Hooray. Cue smugness.
I didn’t for a moment think to ask him for a family medical history, I’m not that organised, and did I mention his hair? So, I didn’t ask about his family’s medical past, didn’t think to talk about allergies, asthma and eczema. I had never had a problem with allergies, so I didn’t ask him about why he avoided certain fruits and why his mother always needed a kit containing her asthma inhaler, EpiPen and various antihistamines. Nope, I was too busy trying to organise the perfect wedding and plan for the perfect future. Yeah, I was annoying, I’m much more sleep-deprived, wizened, bitter and, therefore, a bit more likeable now.
Even if I had stopped to think about his family’s strong allergic reactions to everything from walnuts to water (water!), it would obviously not have put me off, but it would have made me more aware of what to look for in our children.
Over a decade later, we’re still married (mostly happily) and have two high energy boys. They are the centre of our world, a perfect mix of our families. By the time my eldest, Benji was 6 months old we could see that he had my nose, my husband’s height, my mother’s sense of humour, my sister’s appalling eczema, my mother-in-law’s nut allergy, his cousin’s milk and egg allergy, my aunt’s soya allergy and a random pineapple allergy, that we joke came from the milkman.
This long list of allergen food groups arrived after a year of traipsing from doctor to doctor, GP to specialist, private hospital to NHS and back again. I’ve taken him to see over six different allergy departments, numerous doctors, countless nurses, hundreds of skin prick tests, blood tests and an amazing dermatologist.
In the beginning, it started with vomit. Such a lovely way to start. It wasn’t long before we began to wonder if Benji was more than just what the health visitor termed a “sicky baby”. He was exclusively breastfed, after point-blank refusing anything else, and if I ate one of his allergens, particularly egg or dairy, he was up all night, crying with what I was told were wind pains. He would be covered in what I was told was a heat rash. He would be sick in a way that I was consistently assured was normal.
Finally, we sought a second and third opinion and that’s when I was told to exclude dairy and egg from my food. Before this I had no idea that allergens crossed into breast milk Immediately, I stopped all my favourite milky teas, egg-laden brunches and started trying to find alternatives.
At that time, in 2012, it was still unusual to talk about allergies in restaurants, to request an ingredients list and ask about cross-contamination. The allergy world felt like a confusing mystery, like walking into a dark, crowded room and we didn’t know where to find the light switch.
After our GP referral, we were put on the waiting list for the NHS allergy team at Guys & Thomas’, but it would be nine months before we could be seen; during which time I started to wean Benji and unfortunately, we experienced our first truly scary allergic reaction.
Benji had tried cashew nut butter, just the tiniest taste on the tip of his tongue. His face blotched almost immediately, then swelled, his eyes closing and head lolling exhausted on his shoulders. Luckily the GP had given me antihistamines for his suspected dairy and egg allergies and these worked quickly.
We didn’t have EpiPens (we hadn’t been prescribed them yet). We didn’t know to be careful about nuts and other allergens. Things were getting too tricky to wait for our NHS appointment but I was lucky and we had insurance which enabled us to see a highly recommended Professor at a private hospital in the next few days.
The Prof was appalled at our lack of knowledge and severely berated us for risking Benji’s life with our ignorance. My husband and I had lived with Benji’s constant eczema, puffy face, rashes and vomiting but the doctor said this should have been a clue that Benji’s allergies were not being managed properly and that he was allergic to more than just dairy and egg. Benji then had his first skin prick tests and after the appearance of many swollen red dots, we finally had a new list of no-go foods.
We were told that by removing every tree nut, peanut, milk product, eggs, soy and some fruit from both our diets (since I still breastfed), things should improve. We were armed with EpiPens, antihistamines to take twice daily, antihistamines to take when he had a reaction, creams and steroids for the skin reactions and a better understanding of what we were up against.
My little boy still often tore at his skin and came out in a puffy swollen rash without any rational answer. Sometimes we knew the cause, sometimes not and then he’d be sent for another round of skin prick tests and blood tests and stool tests.
It was a surprising ordeal and I was not prepared for it. But in the many and varied doctor’s waiting rooms we go to, I am surrounded by seemingly hundreds of other parents all going through a similar process. There are so many allergy families.
The common feeling amongst the parents I meet is surprise – none of them claims to have had allergies themselves, nor did they expect this to happen to their own child and they don’t seem to know why it happened.
When my second son, Xander, was born we were better prepared. At the first sign of sickness and rashes, I excluded the main allergens and whipped him off to our brilliant local hospital for the usual tests. He was allergic to dairy, egg, walnuts and white fish. But unlike Benji, Xander has since grown out of all his allergies. He has asthma, which I was told could be connected to his allergies and eczema but none of this stops him moving faster than lightning everywhere he goes.
Benji grew out of his dairy and egg allergies by five years old which we are grateful for. These days he has to avoid only sesame, peanut and certain tree nuts. He’s now nine and incredibly tolerant of his eating limits and is the first to tell me when he’s itchy or his throat is swelling so we can deal with it quickly.
Initially, I was taken aback that one of the hardest things to deal with when navigating the new world of allergens, was other people. Belligerent food providers, café owners or even friends and other parents who don’t have allergies and seem unwilling to understand them. They think I’m just making a big deal of it; they don’t worry about leaving food lying about or handing out treats to the kids. I remember the discomfort of being the mum who snatched ice-cream from her toddlers’ hands at parties or went around sweeping up cookie crumbs in the church hall playgroups in case my crawling child decided to investigate. There were also the unknowing friends who’d hand out snacks after nursery and then stood back, astonished as I body-blocked them. It’s socially awkward, but oh so necessary.
People are so much more aware now and I’m so amazed by how things have come on since Benji’s first diagnosis. Shops and restaurants seem to be waking up to allergens and understanding the dangers they pose.
We, as a family, have learned a lot too. We go to the cafes where waiters ask for allergens before ordering, buy foods with clear labels, educate childcare about our action plan and always, ALWAYS carry two EpiPens. It was a bumpy start but we’re finally getting better at managing it, just waiting for the teenager years now!
**Always check the ingredients of any food you’re cooking with to make sure it doesn’t contain something you or your child should avoid.
Rebecca’s Top Tips:
At kids’ birthday parties never be embarrassed to ask what food will be provided and be prepared to bring your own.
I used to visit some houses ahead of time to give them Benji’s dairy and nut-free treats, which they could give back to him when we went trick or treating. Everyone I spoke to was incredibly helpful and kind.
Supply relatives like Grandparents with allergy-free alternatives or favourite foods if your child is staying there for any length of time. It makes things easier and avoids confusion and well-meaning mistakes. My in-laws have been great but could never get the right milk substitute as it wasn’t available locally, so we bought long-life products and left them there for future visits.
Make sure your child’s school has a no nut and no sharing food policy with snacks brought from home. It sounds a little mean but it is helpful that our boys’ school don’t let children share snacks.
Do a little research ahead of day trips to find out what’s on offer food-wise, we were caught out at Legoland a few years ago because there wasn’t anything that Benji could eat (that he liked!)
Take your child’s absolute favourite food, toy or book as a reward for the skin prick tests. After several rounds of tests, Benji developed a needle phobia which was held at bay by the thought of the giant, dairy-free Easter eggs we saved for his testing days. Who says briberying isn’t a valid form of parenting?
As well as being an allergy mum, Rebecca presents a weekly radio show every Sunday evening at 7 pm on Boom Radio.
Reviewed in February 2021 by
Dr Neeta Patel, Consultant General Paediatrician and Allergy Lead at the Whittington Hospital in London.