Meet Clare and son Sam, who is allergic to egg and dairy

Clare lives in Melbourne with her five year old son, Sam.

Sam is allergic to eggs and dairy and has had multiple episodes of anaphylaxis in his five years. His first allergic reaction was at six months old to egg, but since then most of his serious reactions have been to dairy.   

Sam’s most recent reaction was just before the school holidays in April this year while the family were eating at their local pub.

The evening was meant to be a celebration for Sam passing a baked milk challenge with his allergy specialist, but ended in a scary episode of anaphylaxis. Sam was served gluten-free ice cream instead of dairy-free ice cream, despite Clare telling staff of Sam’s risk of anaphylaxis from dairy products when ordering the meal.

“We have been working with Sam’s allergy specialist on baked milk and were excited when he passed his baked milk challenge. I have been baking muffins at home for Sam so I can carefully control the quantity of baked milk, as I don’t trust being able to give him store-bought products yet.” said Clare.

Despite passing his baked milk challenge, Sam is still highly allergic to fresh milk and at risk of anaphylaxis – so Clare continues to be vigilant around all of Sam’s food, particularly when eating out.

On the evening of Sam’s most recent reaction, the family had chosen to return to their local pub where they had eaten several times before and found safe options for Sam on the menu.

Every time they eat out, Clare carefully plans in advance and communicates with the venue abut Sam’s food allergy – she is a self-described “control freak” (as many parents of children with allergies need to be) – to try and cover all the bases and reduce the risk of a reaction for Sam.

When the family headed out to the pub on this evening, Clare went up to order in person as she always does.

“I always prefer to speak to the staff in person when ordering for Sam, rather than using a QR code, so I can have a clear conversation with them and ensure they understand. I always order Sam’s meal first before the rest of the family, and let them know that Sam is at risk of anaphylaxis and highly allergic to egg and dairy. I request they let the chef know, and to please use fresh gloves and fresh utensils when preparing Sam’s meal. I also ask if they can prepare and cook his food separately so it’s not cross-contaminated with dairy or eggs”. said Clare.

As part of the kid’s meals, a single-serve ice cream was included – and as with previous occasions, Clare checked when ordering that there was a dairy-free option available.

When the ice cream was served, Clare advised Sam to just have a tiny bite first to see how it felt on his tongue before eating the rest. “I always feel nervous around desserts, so even if I’ve asked about the ingredients, I’ll still encourage Sam to have one bite first to see if he has any immediate symptoms.”

Sam felt OK after his first bite, so wolfed down the rest of his ice cream tub and then went to enjoy a play in the kids’ playground.

However, within a few minutes, Sam came running back to the table looking distressed. “I immediately asked him what was wrong, and he told me it was the ice cream” remembers Clare.

Having been through multiple reactions previously, Clare took Sam straight to the disabled toilets as she knew his first symptom was usually vomiting.

In addition to vomiting, Sam quickly started to experience more symptoms including swelling and changes in his voice from constricted airways.

“I knew from experience it was clearly anaphylaxis so I didn’t hesitate to lay Sam down and give him the EpiPen. He gets very anxious about having the EpiPen so was screaming, but I was able to administer it quickly, and his symptoms began to improve immediately.”

This is the fifth time that Sam has had his EpiPen administered, so at the tender age of five he has already become all too familiar with ambulance rides and hospital visits.

Once Sam had fully recovered, Clare returned to the pub to report the anaphylaxis and find out about the ingredients in the ice cream. Wait staff checked and then admitted they ran out of dairy-free ice cream, so had served Sam gluten-free ice cream instead – demonstrating their lack of understanding about food ingredients and allergies.

Clare regularly comes across this issue – a lack of understanding of allergens by food service staff including chefs and waiters – and wants the wider community and food service industry to understand the importance of understanding food allergies.

“Gluten-free is not the same thing as dairy-free, and not all allergies are nut-related. Dairy allergies are particularly difficult to manage as dairy is a whole food group and is found in so many products, so food service staff must be educated on this,” Clare said.

Despite having done everything possible to plan ahead and communicate with staff before Sam’s meal was served, Clare still blames herself for not having demanded to personally read the label on the ice-cream tub.

“Even if you think something is safe, you have to check every single detail, every single time, because ingredients can change, recipes can change and staff can change. This experience just compounds yet again, that you just can’t trust others to fully understand or read the ingredients properly.”

While Sam thankfully had a quick physical recovery from the anaphylaxis, the ongoing challenge is the emotional burden and anxiety that follows – which those who have experienced anaphylaxis for themselves or their loved ones know all too well.

“For about two weeks after each of Sam’s reactions, I feel like I go into a hole of catastrophic thinking – worrying about what the outcome could have been, like on this occasion what if he’d been trapped in the jungle gym in the playground and couldn’t get to us to seek help. This is the burden that many people don’t understand – how traumatic anaphylaxis can be for the whole family, and just how emotionally and mentally challenging a parent’s journey is in advocating and keeping their child safe.” Clare shared.

Despite this experience, Clare remains determined that Sam will live a full life and not miss out on anything because of his food allergy. While the family understandably feels more nervous after Sam’s most recent anaphylaxis, they will continue to eat out with careful planning so they can rebuild their confidence and most importantly ensure that Sam has the ability to socialise.

Sam has started primary school this year, which includes attending many friend’s birthday parties, so Clare has been busy communicating with the school and other parents to help educate them and to keep him safe.

“With some planning and preparation, Sam is able to attend his classmate’s parties and participate in all of the fun school activities on offer.” said Clare. “I want Sam to feel confident as he grows up to be able to manage his food allergy – and most importantly, that his food allergy shouldn’t mean he ever has to miss out.”

***

To help prevent more unnecessary life-threatening reactions like Sam’s, Allergy & Anaphylaxis Australia is committed to promoting understanding of allergic disease in the community. During Food Allergy Week, we are calling for mandatory allergy training of all food service staff to protect those at risk.