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Allergy Today My Story: “I'm sorry … your son is anaphylactic.”

Koreen Liew-Young's sonThese were the words Koreen Liew-Young was dreading to hear – she knows what it’s like to live with allergies. She makes a case for food allergy to be taken seriously, including through funding EpiPens®.

“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 reading of ingredients on everything you eat. The fear of eating any food that someone else had prepared. The constant worry of reacting to an allergen while out and about. Or just people thinking that you were too much 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 an auto-injector with adrenaline that is used to help treat severe anaphylactic reactions. Severe means life-threatening, meaning … he could die. My son could now die from eating tree nuts.

Family history repeating

My thoughts took me back to my childhood. I recall looking at my lunchbox with its rice crackers, wheat-free bread that tasted like dry cardboard and canned fruit. Same food, day in, day out. It just seemed unfair compared with 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 my sheets. And my absolute fear was that my son would face the same insecurities that I did.

My family has had a full history of allergies, eczema and hay fever. But 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.

I recall one time I’d accidentally eaten egg. I was sitting on my flat steps, waiting for an ambulance, with my throat closing up and my eyes folded over puffily, yet questioning whether the reaction was serious enough to use my Epi-Pen® as it was sooo expensive.

The risk even when careful

However, there was another time, even after I had started to take my allergies seriously and explain to others the risk that I could die.

On this occasion, I had asked the waiter several times to check the ingredients for egg after he reassured me that a dessert didn’t contain egg. So, I ate it. By the time I got home, I was having an anaphylactic reaction.

I immediately got my flatmate to take me to Accident and Emergency. I spent the night in the hospital hooked up to a machine.

The next day, I returned to the restaurant. The manager tried to make excuses that the dessert was made by another food company that hadn’t updated the ingredients on their packaging.

I contacted a health and food safety organisation to share my frustration and their investigation showed that the restaurant had tried to cover up their mistake and lied about it. The food company had never changed their ingredients. The waiter had simply not read the label 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.

A new life

When I got pregnant just over four years ago, I anxiously thought, would my son have allergies?

When he was born, I was totally shocked. His skin looked normal, and I hoped he’d managed to escape living with allergies and eczema. I did everything I could, from probiotics to excluding foods from his diet and using cream all over him at least twice a day.

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 the age of one, and reduce his peanut allergy over time.

But with each annual blood test, I saw his tree-nut and dust-mite allergy continue to rise. Other small allergies also developed, including to legumes and sesame.

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 frequently applying cream to get his skin back to normal, let alone the broken sleep. All because it only had a “little” bit of something in it.

A new diagnosis

And then here I was, my son nearly four, with dust-mite allergy off the charts and anaphylaxis to cashews and pistachios. I felt confused. Regretful. Part of me guilty, as if my son’s allergies were my fault.

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. I had to explain to him that he couldn’t eat his favourite biscuits and ice-cream because they had “traces” of nuts. It’s become the norm to carry an Epi-Pen® wherever we go.

The need for funding

Epi-Pens® are not funded or subsidised, and buying my son’s Epi-Pen Junior® cost more than $130, and it has a shelf-life of less than a year.

I wanted to write this to raise awareness of the seriousness of allergies and the emotional impact it can have on families. I also wanted to highlight the need for funding and research, especially since food allergies seem to becoming more common.

Don’t get me wrong – people now have greater awareness than when I was young and there are a lot more food substitutes on the shelves.

It’s sad that people such as Edyn Rubena-Misilisi have had to lose their life or face life-threatening experiences for people to take notice.

As a parent with allergies of a child with allergies, I don’t want pity. What I want is for people to understand that’s it’s not being “picky” and that I'm not being precious when I need to know what’s in any food item.

We want the best for our kids. It’s not good enough to just try to keep our kids alive. We need a national strategy that addresses the issues related to this growing condition.

Let’s keep these conversations going.

Adapted from a blog by Allergy NZ member Koreen Liew-Young. You can read her original blog.

June 2019