My Food Allergy Friends
By Jackie Nevard
Fourteen years ago my world turned upside down when I received the diagnosis that my son had seven food allergies.
It started at around six weeks of age when our happy baby became unsettled and wouldn’t sleep for more than 20 minutes at a time. His weight began dropping, not knowing at the time he had allergies, we began seeing a string of GPs, nurses and sleep school. This is where our allergy journey started. After seven months when I was beside myself with exhaustion, I asked my husband to feed him formula. My son pushed the bottle away but milk splashed on him and hives appeared. I went back to the GP and after a blood test, we were informed he had food allergies.
We were referred to a paediatrician who didn’t prescribe an EpiPen and then were told of the 18-month waiting times to see an allergist. Telling us to wait and see what happened. I remember getting home and thinking this didn’t feel right. I wasn’t comfortable just waiting to see if he had a life-threatening reaction and having nothing to save him.
A steep learning curve then began. Avoiding the actual allergens was easy but we quickly became aware of just how many allergens are in everyday foods and managing seven wasn’t easy.
I wanted to teach Thai about his allergens but found there were no age-appropriate resources. I thought to myself if so many children were managing allergies why wasn’t there more help, and decided I would be the one to change this.
I was passionate about showing a person that children could relate to, and also to use the name of his actual medicine, his EpiPen. This way he could learn to ask for it. Resources that existed also focused on nuts, and again there needed to be awareness and education about multiple allergens.
I quickly learned that it wasn’t just Thai that needed education but everyone around him. I went on to create the 'Thai series', which was the first of its kind. Each book tackled a new developmental stage and challenge. Travelling, eating away from home, birthdays, kindy, starting school and experiencing anaphylaxis.
Thai’s first ambulance ride was a real passion of mine, especially after Thai’s first anaphylactic reaction at age seven. We often focus on keeping our children safe but forget to talk about what happens if we have a food accident, and with multiple allergies this is inevitable.
The stories I wrote were designed to be visual because there are many ways children learn through seeing, for example, mum and dad carrying his EpiPens. Images of Action Plans and text in red and green. Red for danger, green for safe, or positive steps you can take to keep safe. The series developed into an education program which is now offered in schools and early learning services throughout Australia and New Zealand. Children in kindy and preschool are learning how to be Food Allergy SMART and how to support their friends with allergies.
The success of the program has been amazing and this has led to a collaboration with a food allergy counsellor to bring Allergy Masterclass to families, which educates the whole family. The allergy burden can often fall on the mother, but working as a team means everyone is educated and this reduces the stress and anxiety that can be felt because allergies affect the whole family.
The real Thai is now at high school, and from seven allergies he is now down to just one, milk. Unfortunately, this is in everything.
With a positive mindset, allergies don’t faze him. He is a passionate surfer and spends 2-4 hours each day living his best life, supported by friends all of which know how to use his EpiPens.
It doesn’t mean it’s all been smooth sailing, primary school was challenging. We used these challenges to teach him that not everyone will get allergies, and it was up to us as a team to work out ways where things could be done better to make him safe and included.
We now share our journey and its challenges to help others navigate life with allergies. We all need supportive friends and that's where My Food Allergy Friends came from. We are so happy that our challenges have helped educate others in such a positive way and hopefully save lives.
