This week is Allergy UK’s #allergyawarenessweek and their aim is to raise awareness of the serious, and sometimes severe, impact of allergies on everyday life. Their campaign #livinginfear has invited allergy sufferers to talk about the frightening side of allergies, not least of which are the statistics that show an astonishing lack of knowledge about how to deal with serious allergic reactions amongst the general public. Recent research carried out by Allergy UK shows that 44% of allergy sufferers in the UK are living in fear of a serious reaction, whilst 68% of the people surveyed wouldn’t know how to deal with a reaction; and this lack of public knowledge could be forcing sufferers into a life of fear and anxiety. This useful infographic published this week uses the acronym FEAR to educate us all on how to recognise, help and potentially save the life of someone struggling with a severe reaction:
Whilst M’s allergies are extensive and challenging, I have always been extremely grateful that he has never suffered anaphylactic shock from anything he has eaten, although the question of whether he could experience one has floated at the back of my mind for quite some time. We were lucky enough to be able to bring home a training epi-pen after our visit to the Allergy UK annual conference in 2014, though other than a cursory look when it first came home, I have to confess it’s been gathering dust in a box on top of one of our kitchen cupboards since then. We’ve even gone as far as discussing, late at night, whether we should have an epi-pen on hand at home “just in case”, but I’m ashamed to admit that that is as far as we’ve got in actually doing something about it.
However, less than a month ago that decision came back to haunt me and I learned unexpectedly just what the reality of the #livinginfear campaign could be like. We were trialling sweet potato with M, a previous favourite that we were desperately hoping would bring some much-needed variety to his meals. The first mouthful on that first Friday night had been eagerly received and much enjoyed by M and although the following day was a little more fraught on the toileting front than it had been for a long time, we hoped it was nothing more than a temporary blip to be overcome. We ploughed on with the food challenges and M had taken to waxing lyrical about how much he was looking forward to including sweet potato in his diet once again. He even asked how long it would be before he could enjoy a “whole baked potato” once again.
It was at the 3rd meal and the increase to 2 teaspoons of mashed sweet potato that things suddenly and rather dramatically went horribly wrong. Mike, rather typically, was out for the evening at a charity whisky-tasting event and it was just me and the children enjoying our evening meal at home. M tasted his mouthfuls of the mash before anything else and then got on with the rest of his dinner. He got no further than half-way through when he suddenly grabbed at his throat and started gulping down mouthfuls of his glass of rice milk. He complained that his tongue was stinging and itchy, his whole mouth was itching and it felt as if someone had grabbed his throat and was squeezing hard. Two glassfuls of milk later and a frantic phone-call to Mike about what was going on, things settled down and M was feeling a lot better.
I had spent those 20 minutes just about holding it all together, whilst running anxiously through all the possible scenarios in my head and trying to work out what I needed to do if things took a turn for the worse:
- Option 1 – Jump into the car with both children, trying to keep as calm as possible and race to our local hospital, 20 minutes away and with no car parking options on site: I’d get there, but what if he stopped breathing in the car and I needed G to get involved, even if it was just by using my mobile to phone for back-up?
- Option 2 – Dash off to one of several nearby friends who are also doctors and ask for their help: much quicker, but at least one of those was at the same event as Mike and who knew whether the others would be at home
- Option 3 – Call 999 and wait anxiously for an ambulance to turn up, all the time acting as the proverbial duck (calm on the surface, but paddling furiously beneath the water): how long would it take for an ambulance to reach us? Could I keep both children calm at home as we waited? What would I do if M stopped breathing? What would I do with G if we needed to rush off to hospital?
We were lucky. The reaction passed, although the stinging pain in his mouth and throat and the sensation of his throat tightening returned at odd times over the next few days. Following a lengthy conversation with our GOSH dietitian, it seems likely that M actually suffered an oral allergy to sweet potato rather than full-blown anaphylaxis, though it doesn’t quite fit with the known causes and triggers of Oral Allergy Syndrome. If you are interested to learn more about living with OAS, then I highly recommend the blog Feeding my intolerant child, whose description of her son’s oral reaction to a simple fruit ice lolly whilst on holiday is definitely reminiscent of those frightening moments at home a few weeks ago.
Needless to say, sweet potato has been banished from M’s diet for the foreseeable future and we are now seeking a local allergist who can help advise us on dealing with any other more serious allergic reactions that M might experience as we continue along the food reintroduction road. Oh yes, and we’ll also be pleading to get him an epi-pen for our own peace of mind and for the sake of his well-being and I will make sure that we all know how to administer it correctly.