Avid gamer and Melbourne Storm fan, Ethan, was diagnosed with a milk allergy at 10 weeks old but it wasn’t until his first birthday that his family discovered the severity of the allergy when he went into anaphylactic shock after accidentally drinking some milk.
Ethan, now 12, continues to have annual allergy testing at the Queensland Children’s Hospital to monitor his milk allergy, eczema and other environmental allergens, as it’s common for children with food allergies to develop multiple allergies.
“It can be tough when Ethan attends his annual allergy testing appointment,” explained his mum Toni. “He goes with high hopes of a negative test result, and talks about getting pizza on the way home. At our last visit, his doctor was great about explaining to Ethan how we just don’t know who will grow out of their allergies and who won’t. Unfortunately, 12 years later, we still haven’t gotten that pizza.”
As Ethan grows up, he faces many questions about his allergy from classmates and other curious people, but he’s got his explanation down pat.
“I say I’m allergic to milk, and if I eat it, I might die. If I say I’m allergic to ‘dairy’, people always seem to get confused and ask if I can eat eggs, so it’s just easier to say milk. Then they always ask me what happens if I touch it, so I explain what hives are,” he said.
As difficult as his dairy allergy can be, he finds that his eczema is a more constant battle in his life, as it’s harder to control.
“Ethan’s eczema will flare up if he’s sick, or if he’s been exposed to any of his allergens. Breakouts are common, and difficult to get back under control. This is a big part of Ethan’s healthcare battle, because while he can control what food he puts in his mouth, his environment is harder to manage and affects him on a day-to-day basis.”
Toni finds the key to managing Ethan’s allergies is communication and careful planning, talking openly with her son about what they could’ve both done differently after any near-miss or incident.
“We also plan ahead together for things like school camp, so he knows what to do if he is worried about food being served or any activities he might be asked to do which could be dangerous for him, such as washing-up duty. I always offer to provide Ethan’s foods for things like sleepovers and parties, but his friends’ parents are really supportive – and in most cases, probably more cautious than I am.”
But accidents do happen – especially when you’re a working mother trying to get your kids to school on time. On one particularly frantic morning, Toni was distracted and accidentally poured normal milk into Ethan’s cereal instead of soy milk. Ethan is now responsible for pouring his own soy milk, and double checking his mum is using soy in cooking.
So, what advice does Toni have for any parents who have a child with an allergy?
“You’re not alone. You only have to look around the allergy clinic waiting room to see a whole range of kids at various ages and stages of their own journey. New parents with their tiny babies look so scared and confused, and I remember feeling just like that. I want to tell them, ‘it’s not your fault, and it will be OK’.”
“Our next challenge involves Ethan taking more personal responsibility for his allergy as an adolescent often beyond our watchful eye.”