Patti Bacchus: Have a severely allergic kid? Take precautions, then try to relax
I was one of those “most wonderful time of the year” parents when my kids were heading back to school. I couldn’t wait for a return to routine and having my bored, bickering kids out of the house for a few blissful hours a day. But it was also nerve-racking.
My kids and I have life-threatening food allergies, and each fall I’d wrestle with how far to go in to ensure they’d be safe at school. I’d buy new Epipens—one for each of their backpacks and two for the school office—along with one for home and two for my purse.
Then I’d update their “allergy sheets”. These were one-pagers with their photos, information about their allergies and symptoms to watch for, and what to do in the event of a reaction. (Give them the Epipen and call 911, and me). I’d make a few copies—one for the classroom teacher and one for the school office—and hope for the best.
We had a few “exposures” over the years. The well-meaning parent volunteers in the classroom who gave my daughter a peanut-butter substitute, telling her it was safe. It wasn’t. She’s allergic to the substitute as well. She realized quickly she was having a reaction and someone called me. I was nearby and got her to a hospital quickly. The emergency-room doctor scolded me for not administering her Epipen. To be honest, I feared that if I gave it to her and it hurt, the next time she might not tell me she felt a reaction coming. In hindsight, I made the wrong call, although we got lucky and got to the hospital in time. When in doubt, you should always give them the injection.
There was a chocolate-bar incident as well that was unpleasant and frightening, but she recovered fully after a few miserable hours, fortunately. My son has had some accidental food-allergy exposures as well, but not at school. We’ve used a few Epipens en route to emergency rooms over the years and had a few frightening close calls. This is just how our lives are, and my kids have never known anything different.
Having lived with allergies myself, and having survived three anaphylactic reactions that required trips to the emergency room for treatment, I take allergies seriously, but I also do my best to take them in stride and not allow them to interfere too much with life.
It’s a hard balance for parents. You want your kids to live as normal a life as possible and not live in fear, but you know a bite—or even a small crumb—of the wrong food could be fatal within minutes. My son has gone from “my mouth feels kind of funny” to having a tongue so swollen he almost couldn’t breathe in the eight minutes it takes to drive from our house to the UBC urgent-care centre. I should have given him the Epipen immediately in that case and I’m damn lucky we made it in time. Lesson learned.
As a parent, you take all the practical precautions you can, but you know that at your kids’ school there may be Grade 6 kids “staffing” the school office at lunch time while your kid’s Epipen is in a locked cabinet in the vice principal’s office. You wake up in the night thinking about your kid biting into a friend’s cookie on the playground and then having trouble breathing. Would they make it to the office in time to get the Epipen? You know they’d have trouble trying to talk and explain and could be wheezing or vomiting at that point. You wonder if anyone would realize what was happening in time to get that cabinet unlocked and administer the Epipen. You know those odds aren’t as good as they should be.
Your kid lives to see Grade 7 and the dreaded Grade 7 camp. Dreaded because it’s at a wilderness lodge and there’s a long hike involved, possibly out of cell phone range. You wonder if you can trust kitchen staff at the lodge to ensure your child’s food won’t be contaminated with allergens. You worry that the packed lunch on the hike might not be safe. You wonder how long it would take to get to a hospital. You call the camp and the camp director asks if you’ve ever had to even use the Epipen, implying that he’s not really taking you seriously and that you’re overprotective.
You’re tempted to keep your kids home, and safe. But you don’t want to be that parent. You believe in taking all the practical precautions you can and then sending your kid off to have a great time. You try to push that little knot of anxiety out of your stomach. But it never goes away completely.
On a routine trip to the allergist, the doctor reminds you that because your child also has asthma, they’re at an increased risk of a serious, or even fatal, reaction. The knot tightens a little more and you go over the safety rules again with your kids and remind them where there Epipens are and how to use them.
We made it through school, and my kids are now healthy young adults. The knot is still there, but it’s loosened a titch. I learned a few things over those years, as both a parent, a school trustee, and a school-board chair. Here’s my advice for parents just starting on this journey:
Take practical precautions and then try to relax and ignore the little worry knot in your gut. Know that you can’t make the world safe for you child but you can teach your child and those who are supervising them to protect themselves by taking reasonable precautions. Tell them to never eat something that isn’t from home or parent-approved. Make sure they know where their Epipen is at all times. Try to get them to wear a medic-alert bracelet or necklace (easier said than done for some kids, especially as they get older).
Give the school clear, concise information about your child’s allergies and what to do in the case of a reaction. Make it a one-pager with your child’s photo on it (remember there will be days when those familiar with your child may be absent). Give them a few copies and suggest they be posted in the staff room, with copies also kept in the classroom and the school office.
Provide safe, tasty alternatives to take to school when the class is having treats. I have a great (and really easy!) recipe for cakes and cupcakes that are free of nuts, eggs, soy, and dairy (we have allergies to all those in our little family) that are easy to make and delicious. It’s a good idea to make a batch of something your child can eat as a treat and keep some on hand to take along to birthday parties and school events so they don’t feel left out. (Contact me via Twitter DM at @pattibacchus if you want the recipe.)
I’ve run across a few parents of allergic kids over the years who insist on their child’s allergens being banned from classrooms and lunchrooms. This was never feasible for my kids due to their multiple allergens. For us, a simple peanut allergy would be a walk in the park. I also believed it could provide an artificial sense of safety. People who aren’t allergic often don’t really understand how serious it is, and I’d never trust my kids’ safety to others. I believed strongly that my kids needed to learn to keep themselves safe, with support from home and the school. If your doctor advises that some kind of a ban is necessary for your child’s safety, listen to them and take that advice, however.
My advice for other parents and school staff is to never try to coax a kid with allergies to try a food their parent hasn’t sent with them or given explicit permission for them to eat.
When in doubt about the severity or possibility of a reaction in a highly allergic kid, administer the Epipen and call 911 and then the parents. It doesn’t matter if it turns out to be a false alarm. If it isn’t and you don’t act quickly, it could end tragically.
Make sure all staff know the signs of anaphylaxis and where the Epipens are, and don’t lock them up during the school day. They must be easily accessible at all times. Don’t have students staffing school offices during breaks. It’s dangerous. A responsible, knowledgeable adult needs to be present and accessible to students at all times.
Respect what allergic kids say they can eat and do. If they don’t want to participate in something, don’t make them. If they want to call their parents about something, let them—immediately. They need to be empowered and supported.
And then try to relax and have a great school year.