"I'm sorry...Your son is anaphylactic"
Updated: May 28, 2019
“I’m sorry…Your son is anaphylactic.”
Suddenly my whole life flashed before my eyes. Growing up allergic to eggs, dairy, wheat, grasses, cats and dust mite, I knew very well what it was like to live a life with allergies. The constant reading of ingredients on EVERYTHING you eat. The fear of eating any food that anyone else had prepared. The constant worry of spontaneously reacting to some allergen while out and about. Or just people thinking that you were too hard work "with all your allergies".
“You will need to carry an Epi-Pen® for him now, here’s a handout on everything you need to know….”
The allergist’s voice started to trail off into the distance while reality sunk in. An Epi-Pen® is auto-injector with adrenaline which is used to help treat severe anaphylactic reactions. Severe meant life-threatening, meaning...you could die. My son could now die from eating tree-nuts.
My thoughts took me back to remember my childhood. I recall looking at my lunchbox with everything made of rice crackers, wheat-free bread that tasted like dry cardboard and canned fruit. Same food, day in, day out. It just seemed unfair looking at my friend’s lunchbox. I did however understand what the repercussions were, of stepping outside my strict diet regime. Skin broken out, itchy all the time, blood on your sheets. And my absolute fear was that my son would face the same insecurities that I did.
My family have had a full history of allergies, eczema and hay fever and during my university years, my wheat and dairy allergy had reduced to the point that I could eat a slice of bread maybe twice a week and have full cream milk in my cereal every day. However, I became anaphylactic to egg because I simply wasn't careful enough with my diet after I escaped my Mum's strict food guidelines. There was the time I'd accidentally eaten egg and I recall sitting on my flat steps, waiting for an ambulance, with my throat closing up, eyes folded over puffy and I refused to use my Epi-Pen® because I questioned if the reaction was serious enough and it was SOOO expensive.
Another time was when I started to take my allergies seriously and I would outline to people that I could die when eating out. I had requested several times for the waiter to check the ingredients for egg after he reassured me that the dessert didn't contain egg. So, I ate it and by the time I'd got home, I was having an anaphylactic reaction. I immediately got my flatmate to take me to Accident and Emergency. I spent overnight in the hospital hooked up to a machine, and I returned to the restaurant the next day. The manager tried to make excuses that the dessert was made by another food company, that they didn't update the ingredients on their packaging. I contacted a health and food safety organisation to share my frustration and their investigation showed they the restaurant just tried to cover up their mistake and lied about it. The food company had never changed their ingredients. The waiter had simply not read it properly. The restaurant then got shut down.
From then on, I was a lot wiser and safer, refusing to eat something if I had my suspicions or didn't know exactly what was in it. Since becoming pregnant just over four years ago, all my allergies blew out in full force with my skin breaking out in rashes, my face red and puffy, and reassuring dermatologists telling me, “Well hopefully you are through the worst of it”. That's great reassurance. I'd been put in the "too hard basket." I anxiously thought, would my son have allergies?
When my son was born, I was totally shocked. His skin looked normal, and I was hoping deep down maybe he’d managed to escape a life living with allergies and eczema. I was doing everything, from pro-biotics, excluding foods from his diet and creaming twice a day minimum all over.
At four months however, my son's skin completely broke out adding fuel to my postnatal depression. My husband and I were at our wits end, trying to manage his skin so we went to see an allergist. With his guidance, we were able to help my son grow out of his wheat allergy by aged 1 and his peanut allergy reduced in time. But each annual blood test, I saw his tree nut and dust mite allergy continue to rise. Other small allergies also developed including legumes and sesame, which makes life tricky when making food that we can both eat. It was hard not to be anxious, not to be obsessive, because other people didn’t realise that it could mean several weeks of antihistamine day and night and rigid creaming to get his skin back to normal, let alone the period of broken sleep. All because it only had a “little” bit of nuts in it.
And then here I was at present day, my son nearly four with dust mite allergy off the charts and anaphylaxis to cashews and pistachios. I felt confused. Regretful. Part of me felt guilty as if my son’s allergies were my fault. Up till now I’d let traces of nuts slide, even let him try a little peanut when his allergy reduced, but now, with the increased exposure, the allergies to tree nuts had worsened. We now have to be more rigid with food and I had to explain to him that he couldn't eat his favourite biscuits and ice-cream because they had "traces" of nuts. It would become the norm to carry an Epi-Pen® wherever we go.
Epi-Pens® are not funded or subsidised unfortunately. To buy my son’s Epi-Pen Junior®, it cost over $130 and they only have a shelf-life of less than a year.
And with this week being Food Allergy Awareness Week I wanted to write this blog to raise awareness on the seriousness of allergies and the emotional impact it can have on families. I also wanted to highlight the need for funding and research going forward, especially since food allergies seem to becoming more common. Don't get me wrong, people now have a greater awareness than when I was young and there are a lot more food substitutes on the shelves. And with stories like Edyn Rubena-Misilisi and with the conversations around requesting for funding for Epi-Pens®, it’s sad that people have had to lose their life or face life threatening experiences for people to take notice. I, having allergies, as a parent of a child with allergies, don't want any pity. I want is for people to understand that’s it’s not being "picky" and I'm not being too precious. We want the best for our kids and it's not good enough to just try to keep our kids alive. We need a national strategy that is thinking long-term for this growing condition. Let's keep these conversations going.