Reflecting on the last 11 years since our first introduction to allergies (when our son was five months old) has made me think about the lessons I have learnt during this time. I know that each family’s lived experience is different, however, I am sure many other families living with an allergic disease will have had similar learning experiences to ours.
Our son is a very happy and hugely energetic kid who LOVES football, dogs, cricket, Dude Perfect and the Rubik's Cube. He has anaphylactic allergies to dairy (has outgrown egg and peanut), Eosinophilic Oesophagitis (EoE), hot/cold urticaria AND Cholinergic urticaria. We have had to use an EpiPen® more than 20 times during his life and endured multiple ambulance trips, hospital stays, endoscopies and food challenges.
The youngest of three, our son had bad colic from birth, but it wasn’t until I gave him organic formula at five months that our journey with allergic disease began. We were living in the Netherlands at the time and were advised by the A&E doctor to use supermarket formula instead. Three months later, when I used some milk powder to mix with porridge, he reacted again, this time to formula from a supermarket. Our GP diagnosed a dairy allergy. This was the first lesson, learning to trust my instincts and go with my gut when managing and treating my son’s allergies.
We returned to New Zealand when he was one, later spent time living in Singapore and returned to New Zealand again when he was nearly seven. His dairy allergy worsened as he grew older and he had multiple anaphylactic reactions to trace amounts of dairy. Once was from a touch screen after someone had eaten chocolate, another was from a basketball after it was used by other children who had eaten ice-cream. Early last year he reacted to a chocolate with no dairy warnings on the label. This reaction made the news and resulted in multiple product recalls around the country. I was very thankful for the support provided to us at this time by our specialist and Penny at Allergy NZ to identify the cause of his severe reaction. Each time a new learning experience and potential threat or situation to avoid.
Over time, his egg allergy has become less severe. However, after what we thought was an anaphylactic reaction to a sausage while staying on Waiheke, he had to be airlifted to Starship by helicopter. It turned out a piece of sausage had become lodged in his oesophagus. Further investigation over the coming weeks and the first of many endoscopies revealed he had Eosinophilic Oesophagitis. Then in 2019, he had a number of unusual reactions that could not be linked back to exposure to dairy. These included welts on his arms and legs after getting caught in the rain and swelling, redness, coughing, headache and dizziness after exercising and then drinking a glass of cold water. What we had thought was a reaction to grasses causing welts when exercising, instead resulted in a diagnosis of Cholinergic and hot/cold urticaria.
Our son is now 11 years old and after dealing with doctors and treatment styles in three different countries, I have learnt the importance of advocacy. When to speak up, when to listen, which questions to ask, which person to ask (Allergy NZ/allergy parent/specialist). We have managed the transition to kindergarten and then on to primary school, sports teams and school trips, sleepovers and school holiday programmes. I have learnt how best to communicate just how serious his life-threatening allergies are and the steps those responsible for his care will need to take to keep him safe. I often joke that when I can see the fear in their eyes, I know I have managed to get the message across!
A big part of managing allergy is risk management and mitigation. Which steps need to be taken to keep him safe but let him get on with living his life, get involved, and not be held back by his allergies. It’s about learning how to problem solve to try and find a solution that will ensure he is able to join in but stay safe. The last 11 years have been a huge learning curve and, though we could do without the inevitable stress and anxiety, I am also aware that it has made us more empathetic and resilient as a result.
Kristen de Monchy
Allergy New Zealand thanks Kristen for sharing her family’s story. We welcome personal stories for publication in Allergy Today. If you would like to contribute your story, please contact Penny on email@example.com
Allergy Today, December 2020