Being a Food Allergy Parent is hard. There is no doubt what-so-ever about that. Between putting a lot more work into “simple” meal planning to worrying whether our kids will be safe in the company of others, we lead higher stress lives than many (but certainly not all!) of our counterparts in the parenting world.
But I’m not the sort to constantly dwell on anxiety–especially since I have a clear window into how much things have improved. There wasn’t as much awareness or as many resources when I was diagnosed in the eighties, and I can only imagine that it must have been even harder for the earlier pioneers in earlier decades. So today, for Thankful Thursday, I’ve compiled a list of ways in which my life as a Food Allergy Mom is better/easier than my mom’s was. I hope that reading through it can make you feel thankful too!
#1 Food allergy action plans
My mom considered it a victory to get my EpiPen (singular, by the way) into the school nurse’s office. She has repeatedly voiced doubts over whether anyone there would’ve known when and how to use it. But at least it was on the premises. Nowadays, it’s SO much nicer to have an easy-to-understand, not to mention standard, form for doctors to fill out and schools to follow. It’s easy enough to use that we can give one to grandparents or friends’ parents too. And we keep it on hand for ourselves.
#2 School training
These days, any teacher “authorized” to administer Epinephrine has to go through a training course, usually with a registered nurse or other school medical consultant. And the even better news is, a lot of schools train ALL of their full time staff in this administration. Those that don’t train everyone usually have a minimum trained-staff-to-student ratio that they must meet. So there are a ton of people in schools now who have at least been trained on when and how to use Epinephrine, and can be called on in an emergency. I don’t think any of the school staff got that kind of training when I was a kid.
#3 504 plans
These days, children with food allergies are legally protected. Schools accepting federal funding are required to grant them equal access to education. A 504 plan is a legally-binding document that outlines precautions and accommodations for the student. It is written and agreed upon between parent and school, often with the help of other parties as well. I don’t know exactly when this legal accommodation appeared, but my quick Googling implied that it may have been as recent as 2008–the year my older son was born. Not all food-allergic students carry 504 plans, and there isn’t agreement on whether or not all of them should. But it’s great to know that your child is within their rights to have one, if you want it or feel the need to force school compliance.
#4 Food allergen labeling laws
I’m not sure exactly when these took the shape they have now. Certainly, they have not always been this comprehensive. “Secret” or “proprietary” ingredients were still acceptable when I was young, which meant that even after reading a food label, there was still a risk that allergens could sneak into a food. The declarations of “top allergens” and the inclusion of “processing aids” are major food labeling victories! These did not exist when I was a child.
#5 Cross contact statements
As ironic as it might seem to include these voluntary and inconsistent warnings here, their mere existence is an achievement. They didn’t happen when I was a child. In fact, I was seven years old when we first discovered, the hard way, that cross-contamination was a danger. Our doctors never told us we needed to call companies to check on how food items were made. Nor did we really consider that what happened in my second-grade class with a shared knife might happen in a factory. So it’s no surprise that food manufacturers didn’t catch on for many years either.
I believe I was a teenager when we first spotted these warnings on food labels. Ironically, many suddenly appeared on foods I’d been safely eating until that point. We were confused, to say the least, but this marked an increase in food allergy awareness within the corporate sector. So while not all food companies label for cross contact, at least most manufacturers are aware of the risks.
This medication is becoming controversial, but many still take antihistamines for minor reactions. And Benadryl was only available as a prescription when I had my first reaction. Yup, my mom had to go from the ER to the pharmacy to get the Benadryl that I took following my first anaphylactic reaction.
#7 Emergency room anaphylaxis protocols
When my mom arrived at the emergency room with one-year-old Me in her arms–I’d passed out from anaphylaxis in the car but woke up as we approached the hospital–the first thing anyone said to her was “Baby looks okay, Mom looks like she needs a tranquilizer.”
During another ER visit (one that didn’t involve passing out) the doctor looked down my throat, declared that it looked a little red, and decided he wanted to perform a strep test. Yes, strep. Despite the fact that I was anaphylactic to tree nuts and came in for a case of known ingestion. I guess my lack of full-blown swelling and wheezing meant my reaction wasn’t recognizable.
Unfortunately, not everybody has positive experiences at the ER even now. But food allergies are taken a lot more seriously by doctors these days.
#8 Regular allergy testing by Allergists
My children get updated skin testing done nearly every summer, unless recent reactions can verify that nothing has changed. I got tested once for food allergies during my childhood.
It wasn’t after my anaphylactic reaction at the age of one–nobody sent us to an allergist after that. Nor did I receive any prescription to take home other than the above-mentioned Benadryl, which was a one-shot deal.
It wasn’t after a host of reactions in the months before my 4th birthday, culminating in another anaphylactic episode. I got take-home epinephrine after that, but nobody tested to verify the food.
It happened when I was 6, after my regular pediatrician changed to one who had more interest in allergies. And after that one test was done, nobody ever suggested I get re-tested until I started seeing my kids’ allergist. I was 30.
#9 Increased Awareness
Not everybody has a favorable view of food allergies, but at least most of the population has heard of them. Celebrities share their stories, which harnesses star-power. There have been more articles and news stories on food allergies. And the overall increase in food allergies means that it’s hard to find anyone who hasn’t met someone who has them. As a kid, I can remember describing food allergies to people, and getting a lot of blank stares in return.
#10 Allergy friendly food brands
Companies like Enjoy Life Foods, Free2b Foods (formerly SunCups), Silk, So Delicious, Cybele’s Free to Eat, Daiya, Sunbutter, and so on–these brands are still in their youth. Most have grown out of necessity, or when someone in the food allergy community saw a need. Even when companies had products that were allergy-friendly during my childhood, few were produced on dedicated lines or in dedicated facilities. These brands are amazing, and every year, more companies join the fray! When I was a child, allergy friendly cooking/baking had to be done at home. Most substitutions were harder to learn about, too.
These brands may be smaller and harder to come by (not to mention more expensive) but they are amazing and they grow every year!
#11 Allergy awareness products
Medical ID bracelets have existed for a long time, but their purpose is to inform medical responders. Nobody reads a child’s medical alert bracelet before they play. Products like ours (and from other great companies) give parents the opportunity to safeguard their children better. Especially when they’re too young to advocate for themselves.
#12 Potential treatments for food allergies
Let me tell you, this concept blows my mind. I have food allergies. I have always had food allergies, and grew up with the knowledge that I always would have food allergies. It’s an accepted part of my life.
The thought that someday I may be desensitized to my allergens, or that my or my children’s immune systems could somehow be reprogrammed, or that I might be able to prevent food allergies if I were to have any more children… Well, that’s nothing short of amazing!
In fact, I’ve been all too happy to join in on the research. My kids have been involved in several research studies. One aimed to improve food allergy testing. The second compared eating baked egg to egg OIT. And most recently, my son participated in one of the peanut patch trials.
#13 The Internet
This one major piece of technology is probably the biggest influence in improving quality of life for allergy sufferers. Just think, with a few keystrokes or words spoken, you can search for allergen information on a new food brand. You can find out if your child’s mysterious symptoms are signs of a reaction. Finding ingredient substitutes for a recipe is easy(ish), as is finding recipes developed by those who came before you.
You can get support from other people who are going through the same thing as you. Or find facts and resources from reputable Food Allergy Organizations. You can ask questions and get answers quickly, join support groups, and learn about your legal rights. Information online can help you arm yourself for the next time you have to stick up for yourself or your child. Looking for nearby allergists, treatments, or clinical trials is easy. And so many more things! A wealth of information is available at your fingertips, 24/7!
My mom got a monthly newsletter from a now-defunct allergy and asthma organization. And most of the articles were about asthma.
#14 Smart phones
This device gives me more freedom than my mother ever could have dreamed of. In addition to connecting me to the internet and all the benefits mentioned above, it also gives me instantaneous contact with anyone who is taking care of my child.
If my mom wanted to leave the house while I was at school or a friend’s house, she had to accept the fact that if anything happened to me, she wouldn’t know about it. It was a constant struggle between being ready for action and needing to get the minutiae of daily life done. I, on the other hand, can go just about anywhere while my children are out. If there’s an emergency, I am only a phone call away.
(I make sure everybody knows to call 911 before they call me, of course.)
As Food Allergy Moms, it sometimes feels like we’re constantly hacking the overgrowth back from the trail to safety, inclusion, and understanding. But it’s because of my mom and other pioneers that there’s even a recognizable trail for us to clear. Today, I’m thankful for how far we’ve come!