Your child with allergies heads off to university. On her second day of first year, she orders a smoothie. Something in the smoothie, or something it touched, triggers a severe allergic reaction – anaphylaxis. Two days later, the unthinkable for any parent happens – she dies.
How can this happen? As a parent of a child with severe allergies, you've been hyper-vigilant since they were first diagnosed. Each transition in your child's life – from entering daycare, to moving into grade school, to the first day of Grade 9 – has been marked by educating each new teacher, informing the school, creating an anaphylaxis action plan, educating classmates and educating the parents of your child's friends.
Tragically, this situation is real. It happened recently, to a young woman at Queen's University in Ontario.
When I heard the news, I was deeply saddened. As a parent of a son with a food allergy, I texted my husband to make sure Sam, who's 14, had his autoinjector in his knapsack.
But as an allergist, I took a deep breath. It's vital to bear in mind that death from anaphylaxis is, fortunately, rare. This incident highlighted something else for me: it caused me to think about the transition of adolescents and young adults to taking responsibility for their own allergy management and the unique challenges this presents. Here are some thoughts on how to address this transition.
First, remember you're the parent. Transitioning a teen to responsibility for their own allergies needs to be managed the same way you transition to autonomy in other areas: by degrees, with lots of openness and dialogue.
Kids who are severely allergic, but haven't had a severe reaction, may be a little more relaxed about their condition. And teenagers naturally begin to push back against parental authority and direction. You know your child best; you're the best judge of how much leeway to give them. The way I put it: you want to lengthen the umbilical cord while there are still lots of safety nets.
In practical terms, in my own family, this meant giving Sam some autonomy by ensuring that he was carrying his own autoinjector to school in his bag or on his person – the stretching of the umbilical cord part – while knowing he was still headed to the "safety net" of daycare after school where the staff knew all about his allergies and had an autoinjector for him. Packing for camp means I fill out the forms outlining his allergies, but my son takes responsibility for actually packing his autoinjector.
Then there's the dialogue part: yes, it's a cliché, but it works. Use incidents that make the news, such as the one above, to open discussion with your teenager/young adult. How would you have dealt with this situation? Have you told all your close friends about your allergies and what to do if you have a serious reaction? If you're indulging in risk-taking behaviour (and young people do), who's the group's designated driver? And which of your good friends is your allergy "designated driver" – the one who checks in to make sure you have your autoinjector and are being careful around food choices?
Then the day arrives. Your child is leaving home for the first time, often to go to school. Here's what I would review with him or her:
The signs and symptoms of a reaction – what are they? Make sure you identify them to your new friends. Chat about difficult situations that may arise and how to troubleshoot them.
If you're shopping for yourself, read labels. I won't be there to do it for you. In the dining hall – if you're not 100 per cent sure – ask about a dish.
How can we make carrying your autoinjector even easier? Does it need a new case so that it doesn't make you stand out in a way you're not comfortable with? Let's check the expiry date.
Who's your buddy when you go to parties? Make sure they're chosen and informed before the evening starts.
A MedicAlert bracelet that outlines your condition in a new environment is a great idea. First responders will know the appropriate treatment if you have a reaction. Let's pick a style.
These are some suggestions, so that you can send your kids off to school or out on their own with peace of mind. Make sure you've got some tissue handy for yourself when the day comes to wave goodbye to your college- or university-bound allergic child.
As for your child – make sure they have their autoinjector handy.
Dr. Adelle Atkinson, MD, FRCP (C), is a clinical immunologist in the Division of Immunology and Allergy at The Hospital for Sick Children, a project investigator in the Research Institute and an associate professor of paediatrics at the University of Toronto.