There are 15 million Americans who have food allergies. One in 13 children have food allergies (that's about two in each classroom) and every three minutes a severe food allergy reaction sends someone to the ER in the United States.
Six years ago I became a "food allergy Mom." Not a title I ever wanted, but one I take very seriously. I've written quite a bit about how we manage food allergies in our lives, house, school, etc. What I don't ever talk about is how other families do it. Because each food allergy family is different. And each one has a different comfort level with risk when it comes to the potential of a food allergy reaction.
And from what I suspect stems from fear, and confusion about the way we all act differently, there can be a lot of judging of people with food allergies. Non-allergy families judging "food allergy parents" for being too dramatic or asking too much, children judging their peers with food allergies for being different, family members feeling burdened or resentful about having to change family traditions or being asked not to serve favorite-recipes at family gatherings. Oh, and families with food allergies judging other families with food allergies because they don't follow the same "rules" as they do.
It's very confusing to "non-allergy" people to understand why some families ban food their child is allergic to from their houses (such as peanut butter) while others don't. Some families allow their children to eat food that has "may contain" warnings on it, while others do not. Some parents are okay with EpiPens being in a nurses office across school while others have their child self-carry (wearing a belt, or keeping in a purse or backpack at all times). Some families might go to a baseball game without hesitation, while others will only attend peanut-free games. So many differences.
Why don't all families with food allergies adopt the same practices – wouldn't it be great if there were a "best practice guide for managing food allergies?" Well, there are plenty of books on the subject, but not everyone reads them! One reason I suspect families learn different things about their diagnoses and how to manage them is because there are differences among doctors. For example, if a family was diagnosed in the ER following a severe reaction and never follows up with an allergist, they may only have a small amount of information and base their practices based on that. They are not getting the same level of specialized care and instructions that an allergist could provide. Some people see a pediatrician or family doctor for food allergy management, and while they may have good general medical knowledge of food allergies, they will definitely not have the same specialized education and experience as a board certified allergist.
Did you know that 90% of people with food allergies in the United States are allergic to one of these top 8 foods: wheat, eggs, milk (all dairy), shellfish, fish, soy, peanuts and tree nuts?
My experience has been that the most conservative food allergy families I know are under the care of an allergist, have done a lot of research and try to stay on top of the latest food allergy news. They have a lot of fear and worries about their children having a reaction, based on having been through a serious, possibly life-threatening reaction. They have NO desire to ever go through that again.
I also believe that the length of time since the last reaction happened and the severity makes a difference in how much we try to protect our children. For example, after my child had a severe reaction to shellfish, I had to administer an EpiPen and call 911. It was pretty traumatic for all of us. I was on "allergy lock-down" for at least 6 months after that, not willing to risk any chance that the same thing could happen again.
We do the best we can with what we have. Dealing with food allergies is overwhelming, and can be physically and emotionally exhausting. It can take months, even years, to learn everything you need to know about managing food allergies. I truly believe that most parents make the best decisions they can at the time for the children. Of course, there are some neglectful, abusive parents out there, so this isn't all-inclusive. But generally speaking, we want our children to be happy, healthy and safe. And we make the best decisions we can to make that happen.
We all want our children to be happy, healthy and safe.
We are protective of our own. Sometimes parents attack each other in this world, and food allergies are no exception. I've seen non-food allergy parents get really upset that their children have to limit what snacks they can bring to class or what kind of food they can bring to lunch (peanut free schools are becoming more popular now). I've also seen food allergy parents verbally attack each other out of frustration. Even though I'd personally love to see everyone think about the greater good and safety of all of the children, at the end of the day, I believe most people are out to protect their own first. And therefore, in my opinion, it is up to each parent of children with food allergies to focus as much as they can on what they can personally do to educate and empower their children to take care of themselves, rather than rely on the world around them to take care of them. This may be nearly impossible to do when they are babies, but as soon as those kiddos start walking and talking, we can start teaching them.
It gets easier. Like all challenges in life, managing food allergies does get better. I remember feeling terrified to leave my child at pre-school the first few months because I couldn't shake my fear that something would happen (it never did). I was equally nervous about sending him off to Kindergarten. Now we're finishing up first grade and he has a solid understanding of food allergies (as much as a seven year old can) and it is very manageable. Yes, we still struggle with going out to eat for the whole family because there are few truly safe places we trust – however, generally speaking, dealing with food allergies today is 200x easier than the first year, second year, even the third year. It gets easier. So if you think a family with food allergies is acting in bizarre ways and you wish they would just relax… try to be supportive and know that they will find it gets much easier the longer they are managing it. But for now, be willing to work with them and help them feel comfortable that their child is safe.
Images in this post are slides from a speech I gave on food allergies. You can watch a video of the presentation online here.
Figuring out what is acceptable risk can be a challenge with things like the optional "may contain" warnings on products or the difference between being down the street from the hospital and being the middle of nowhere. There are a lot of situations where a group of food allergy families might all come up with different ideas of what is safe for them and I think that adds to the confusion, stress, and judging.
I struggle to find the right level of caution, I can see how someone observing me would probably point out some contradictions!
Thanks for the note, Sarah. I agree, proximity to medical care definitely plays a part in how many of us decide what we are comfortable with. I have read enough studies on "made on shared equipment' or "may contain" that I don't feel comfortable with those foods at all because of how severe my child's allergies are. However many other families make the decision that they are okay. It's a tough decision!
Really well written post. It truly is 200x better now, but nevertheless, each developmental phase brings new challenges. Thankfully, as my children hit these new phases, I'm made so many wonderful food allergy friends–both close and afar. Each one seems to know how to say the right thing the right time.
Agreed, support groups are more than support–they educate, guide and are true life savers! Keep up the good work in MN!