Summer reflections, by Karen Leahy, Anaphylaxis Campaign member
It’s a little before 8am and the porch of our holiday chalet is baking hot as the sun beats down from a clear blue sky. A little boy and his mum head down to the swimming pool as the tall trees above rustle in a light breeze. It’s a vast improvement on our usual UK holiday.
Our family of four has opted for staycations since 2012. During this time our August getaway has been characterised by rain and unseasonably cold days. Last year, to add to this miserable combination, our elderly dog died on day three. We said goodbye to our much loved pet with torrential rain slashing across Dartmoor… and a promise that his ashes would be posted back to us. These are NOT the family holidays you’d want your children to remember.
The dog’s passing did, however, open up the possibility of a foreign holiday. So, feeling confident we could manage our son’s nut allergy in France, we started the tedious internet trawl that characterises the modern booking ritual. We’d learnt a lot more about nut allergies after Jamie’s second reaction, to a bag of sweets with a nut warning. We thought we were doing well, so this reaction was something of a shock. 6 year-old Jamie, his non-allergic identical twin, and I watched allergy videos, read information sheets and blogs, trying to gain the knowledge required to prevent further reactions. We cut out ‘may contain…’ foods.
But minor reactions kept coming to seemingly random foods and we began to suspect another ingredient might have been responsible. In November 2015 we attended our NHS allergy clinic clutching a handful of sweet wrappers and came away with a diagnosis of possible citrus pectin and/or gelatine allergy, that was thought not to cause anaphylaxis.
At the end of January, just as we were planning our holiday, a now 8 year old Jamie, suffered slow onset anaphylaxis from a yogurt drink that he’d previously consumed without incident. My one lapse in reading every ingredient on every label in a two hour stint around the supermarket sealed the diagnosis… pectin was an ingredient in the yogurt. Paramedics called an ambulance to take Jamie to hospital for treatment and we were sent home that evening knowing life had just got a whole lot more complicated.
With pectin we were in unmarked territory, where few allergy sufferers have been recorded as going before. But we joined the many who are forced to step off the path of the 14 top allergens, with their carefully documented route through the manufacturing process, and that every server, in every European restaurant should, at least in theory, be able to tell you is in your food.
From the latest app for shopping or eating out with special dietary requirements, restaurant menus, ingredients lists, and product recalls, to cross contamination risk assessment and information sheets – precious little is geared to allergens not in the top 14.
When you are diagnosed with a nut allergy leaflets explain which foods to avoid and medics, caterers, food manufacturers, and charities are very knowledgeable. When you get diagnosed with a rare allergy you have a brief discussion about avoiding foods that have caused a reaction and you’re on your own. For us suddenly the English tea room, with it’s pectin laced jam, is as much a no go as the curry house with its nut exposed kitchens… And there was more when Jamie’s blood test indicated avoidance of all citrus fruit, including juices. Now even a jug of water, with fresh lemon slice, is an issue…
So the foreign holiday never did get booked and here we are in August, having only eaten out twice since the reaction, self-catering in a, thankfully, hot and sunny Kent. Abroad will have to wait a while longer as we risk assess flying and surviving in foreign lands with multiple allergies. The complications and time required in organising a trip of this kind threaten to outweigh any benefit… and thinking back to January I wonder how we would deal with a similar emergency in another language or replicate the complicated negotiation I now have in restaurants.
On the way we spent two nights at a Premier Inn. Both they, and Pizza Express, seemed a little confused as we turned away the allergy listings, saying they wouldn’t help, but after a little toing and froing we enjoyed two breakfasts and two evening meals out. At the friendly Deal pier ice-cream parlour Jamie was able to enjoy a fully checked treat and the St Margeret’s Bay ‘Coastguard Restaurant’ went out of their way to prepare a separate meal. When the kindly lady in the holiday site shop seemed worried, Jamie gallantly opted for the one chocolate bar without a nut warning. The rest of the time it seemed simpler to eat in or pack a lunch.
Next it’s back to school and back to hoping Jamie doesn’t have a reaction there. Since the nut allergy diagnosis he has taken a packed lunch – a decision made when we became concerned about the attitude of the company overseeing school dinners – it almost certainly saved him having his first bad pectin reaction in the busy dinner hall.
We try to deal with each new challenge as it comes along, but it’s difficult not to flick the fast forward button and wonder what happens when the next school trip comes up, when ‘the’ residential trip rears it head, university, work, social life, girlfriends. At least I can see a little boy and a caring twin brother who truly ‘get it’ and know that things are different for them and that others have challenges of their own to contend with.