Louise Jones, the founder of nutmums.com reveals her free from story and her toddler’s peanut allergy.
Disclaimer: Please note this contributor’s account is a personal experience and should not be considered medically approved dietary advice.
We were catapulted into the world of severe food allergy in April 2012. My toddler son’s first taste of peanut triggered a life-threatening allergic reaction, resulting in him spending four days in intensive care.
Until then, we were blissfully ignorant about food allergies. I was only vaguely aware of the term “anaphylactic shock” and barely gave food labels a second glance. Oh, how life has changed from that day on however.
We left hospital armed with a bag of EpiPens and antihistamine, having been given a crash course on deciphering ingredients lists for foods. Our son was now amongst the 1 in 50 UK children with a peanut allergy. We had joined the nut-free world, or as another nutmum described it, “the club nobody wants to join”.
A NOT SO INNOCENT PEANUT BUTTER COOKIE
At the end of April 2012, my partner, Ian, took our 20-month-old son, (who I wish to refer to simply as ‘D’) to visit his nana, while I stayed at home with our premature newborn daughter. At lunchtime, I gave Ian a call to make sure the 50 mile journey had gone smoothly. While chatting, I heard D begin crying in the background. Ian said he’d better go, he’d call me back.
D wasn’t having a tantrum. He hadn’t had a bump. He was suffering anaphylaxis, a potentially fatal allergic reaction.
He had bitten into a peanut butter cookie and had immediately begun to swell. His face puffed up and one eye swelled closed. He was very distressed and his breathing was loud and wheezy. Fortunately, his nana, a retired nurse, recognised anaphylaxis. We were incredibly lucky that the early response paramedic arrived in minutes, with the life-saving shot of adrenaline. Had there been any delay with dialling 999 or the paramedic’s arrival, it could have been too late.
At the hospital, the doctors became concerned that the swelling in D’s throat was not subsiding. They decided to induce him into a coma, so they could insert a breathing tube before his airways swelled closed. He was transferred to intensive care at another hospital where he spent the next three days on life support, fighting the reaction. Fortunately, he recovered well and within a week was back home, showing no sign of what he had been through. What a relief.
As far as D was aware, life had returned to normal. However, for myself and Ian, everything was suddenly, overwhelmingly different.
LEARNING TO LIVE NUT-FREE
At first, all I could think was, “How could a biscuit cause all this?” That, for me, is still one of the key aspects of caring for an allergic child. Once diagnosed, you comprehend that a trace of an allergen could kill your child in minutes. However, you are then left safeguarding your child’s life from something that many people don’t realise is even a danger.
If a toddler was running into a road or was about to put their fingers in a plug socket, a natural reaction for any right minded person would pull them to safety. Whereas, if my son found a nutty chocolate bar and was struggling to open it, some kindly soul might say, “Let me help you with that.”
It is a continual juggling act of making people aware of the severity, versus giving your child the most normal life you can. Food allergies are indeed an “invisible disability”. Outwardly your child appears perfectly normal, until they react there is nothing to indicate the damage that food could inflict.
CREATING A NUT-FREE HOME
Once out of hospital, the main survival skills we had to master were when and how to use an EpiPen, to always carry his emergency meds and to read every food label, every time. On a mission to create a nut-free home, the first thing I did was to purge our cupboards of anything containing peanuts or nuts. Even this was trickier than it seemed, what about “may contain nuts” warnings? Did things like coconut and nutmeg count as a nut?
The first supermarket shop took hours. I ordered online and read every single product description. Then, despite all the time and effort, when the food delivery arrived, the biscuits had a nut warning label. It was incredibly frustrating.
Food shopping did get easier, as I built up a list of “safe products”. Although we tended to eat the same things each week, at least it felt like one aspect of nut-free living was under control. There have, luckily, only been a handful of occasions where a surprise ‘may contain’ label has appeared on a regular product. Each time this happens, I’m abruptly reminded never to take nut safety for granted and to check the labels each and every time.
TODDLER SOCIAL SCENE – FRAUGHT WITH ALLERGIC REACTION POTENTIAL
The challenge of food shopping was just for starters. I had to figure out how to cope with playgroups, play centres, play dates, parties. So many day-to-day activities now seemed fraught with danger. I was always on my toes, policing potential nut consumption and continually on red alert for D picking up a dangerous food off the floor. You don’t want to be a helicopter mum. You don’t want your child to feel they are different. So, you try to watch them like a hawk, whilst trying to appear relaxed. It’s exhausting and can be quite lonely.
I’ll never forget the time we were at a playgroup and were led into a side room for a surprise party. The biscuits, cakes, sausage rolls were all homemade by various different people. D ended up with a handful of crisps and a couple of grapes on his plate and I spent the entire time with my stomach in knots. I learned my lesson and made sure I carried safe treats from then on.
LEARNING TO ADAPT AND GETTING OTHERS ON BOARD ABOUT AWARENESS
It did get easier as my son, playgroup organisers, nursery staff, school teachers and other mothers became aware of his allergy. However, even though I was learning to navigate my toddler’s social life, other aspects of our family life also felt curtailed. Would we always be the host for any family gathering? Would we ever be able to eat out? Would we ever go abroad on holiday?
In the early days, my time was completely taken up with the everyday practicalities of keeping my son safe. At one of our first allergy clinic appointments the discussion turned to whether there was hope, one day, for a cure. At the time, words like “desensitisation” and “Addenbrookes” were over my head, all I wanted was names of some safe food brands and somewhere we could eat out.
INSPIRED – SETTING UP MY BLOG NUTMUMS.COM
In January 2013, having lived nut-free and under the threat of anaphylaxis for eight months, I set up my blog Nutmums. It was both a coping mechanism and a source of support I felt was much needed. There are half a million people in the UK living with nut allergies. That’s a lot of parents searching for nut-free brands and interrogating restaurant managers about their ability to cook a nut safe meal. As with any health condition, you don’t fully appreciate the impact it has on daily life until you are actually living it. It made sense to try to pool the knowledge.
My son is now four and half-years-old and we’ve been in the nut-free world for three years. We often eat out, we’ve holidayed abroad, he’s started school, been to birthday parties and has started going to friends’ houses by himself. As my son puts it, ‘I don’t eat nuts’. For us, as parents, yes, it can be stressful. Yes, nut allergies add an extra layer of organisation onto everything we do. Yes, there’s a lot we’ve yet to go through. But his allergy is now a part of life that we’ve become accustomed to.
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