The Haves and the Have Nots
Our food allergy journey began seven years ago when my oldest son was two years old and our youngest was only six months old. Because my husband has allergies to walnut and pecan, our pediatrician told us to not give nuts to our boys until they were at least two years old. (Note: this recommendation was based on the old guidelines released by the American Academy of Pediatrics in 2000, which were changed in 2017 as a result of the LEAP study.)
So, we waited…
In December of 2012, I gave my oldest son, Owen, his first bite of peanut butter on toast when he was just two months past his second birthday. He immediately reacted with red, swollen eyes, hives on his face and an itchy tongue. Benadryl quickly made the symptoms subside, and the reaction thankfully did not progress. It was surprising and scary, but not terrifying.
When we had our first appointment with an allergist shortly thereafter, we learned through bloodwork that he was allergic to tree nuts in addition to peanut. As an overwhelmed and brand-new allergy mom, I asked the allergist if I should take all the nuts out of our house. She replied, “Would you leave a loaded gun on your kitchen counter?”
However. I still did not fully get it. You see, I’ve developed a theory about food allergy families: the haves and the have nots. I was a have not – I had not actually seen anaphylaxis.
That changed a few months later when my youngest son, Grayson, had his first bite of banana at six months old. His reaction was swift and severe. First, his mouth and throat turned purple. He was very still and quiet. I gave him Benadryl and put him in the car and drove to the pediatrician, which was just a few minutes away. (Of course, I now know this was a mistake and I should have called 911.)
The doctor saw us immediately and gave him more antihistamine and oral steroids that he vomited back up. He developed full body hives. Finally, he turned gray, and his eyes rolled back in his head. The doctor gave him his first shot of epinephrine, and the color started returning to his face. However, once she sat him up to listen to his breathing, the color went right back out again. She administered a second shot of epinephrine a few minutes later, along with inhaled steroids and oxygen.
I will always remember the intense tightening of my own chest and literally not being able to breathe. Inside I was screaming “PLEASE SAVE HIM!” – but all I could do was get a whisper out. I did not want to distract the doctor with my own reaction to this terrifying situation.
The ambulance arrived and took us from the pediatrician’s office to the emergency room, where we waited for at least four hours. Grayson was bright red all over and alternated between screaming and crying in pain and being completely passed out.
I am forever grateful that my child was saved. A lot of things could have gone wrong, and I feel like we were incredibly lucky. But it was still the worst day of my life. Watching Grayson go through that reaction is a horrifying memory that will be forever burned in my brain and on my heart.
I had turned into a have. I had seen anaphylaxis and would never be the same.
We would learn through testing that Grayson was allergic to banana, peanut, tree nuts, dairy, egg, wheat/gluten, soy and most seeds and legumes. We also found out he had FPIES to sweet potato. And Grayson later had a second anaphylactic reaction to wheat during a food challenge. Owen also had his own anaphylactic reactions – one that was an exercise-induced, food-dependent reaction, and one during a food challenge to pea. We were devastated.
The thing is, once you are a have and you have seen your child in anaphylaxis, you are changed forever. You can no longer accept (or even just hope) that food allergies are no big deal. It affects every aspect of your life. Restaurants, play dates, movie theatres, traveling, plane flights, hotels, camps, birthday parties, holidays, family events, school events and field trips –- every time food is involved you have to plan ahead, ask questions and be prepared with safe options for your child.
That first anaphylactic reaction snapped me to attention. I took inventory of every aspect of our lives and how we were going to keep our boys safe. We ultimately switched preschools, and later, made the decision to attend private school where we would not have to fight an uphill battle every day to change policies that would keep our boys safe and included. I recognize that this is not an option for everyone, and I am so grateful for our opportunity to have our boys attend school that is proactive and progressive about food allergy management. If you need help creating a safer environment for your child at school, research a 504 plan – I really like the overview of options from Food Allergy Research and Education (FARE).
Once the boys were settled into a safe school environment, I became involved in the larger food allergy community. I began participating in and later co-chairing FARE’s Walks for Food Allergy. I joined Food Allergy Connecticut, a FARE-recognized support group, where I was the communications chair for two years. And later I began co-chairing the FARE Connecticut Luncheons. I also engaged with End Allergies Together (E.A.T.), serving on their Greenwich benefit committees and participating in their One Word PSA. Now I am proud to serve as a member of the Board of Governors for FARE and to use this blog platform to educate and advocate about food allergies on a larger scale.
Being a part of the larger food allergy community helps me feel like my family and I are moving in the right direction – which is hopefully towards a time in our lives where we won’t have to live in fear of food.
Once I became a have and had witnessed anaphylaxis, I worked hard to educate myself and then others about the signs and symptoms and how to treat it. Based on my own experience and numerous conversations with other food allergy parents, here are some important tips and misperceptions that I would like to share:
1) There is no such thing as a mild allergy. There are mild reactions, yes. But one allergic reaction does not guarantee what the next one will look like. My two boys have each had two anaphylactic reactions – and all four of them were completely different. And they’ve had a long list of “mild” reactions, too. You don’t know how you are going to react in a given circumstance. Many variables can come into play, including if you’ve just exercised, if you are sick or about to get sick, how much of the allergen you consumed, if you’ve had alcohol (if you are an adult), and more.
In my personal interactions and experience, this is a very hard concept for the parents who are have nots – who have not seen an anaphylactic reaction – to wrap their heads around. Maybe your child will never have a life-threatening reaction. That would be absolutely wonderful. But you must treat food allergies seriously just in case. There is no downside to being educated and prepared.
2) Know the signs of anaphylaxis and educate everyone who will ever be alone with your child. It is extremely important to understand what the symptoms of anaphylaxis are, and reactions can look different every time. I love this Food Allergy & Anaphylaxis Plan, which very clearly lays out the symptoms and visually explains what is a mild reaction and what is an anaphylactic one. I’ve talked to a lot of people who knew to watch out for respiratory distress, but did not understand that symptoms from any two body systems means anaphylaxis.
I keep a copy of this plan posted on my kitchen cabinet, I carry it in both of my boys’ medicine bags, and there are copies with the nurse and their teachers at school. I also educate any babysitter or mom who will be keeping my kids for a playdate. Trust me, I have gotten a lot of side eye over the years with other parents thinking I was over-doing it on the food allergy lesson before I left my boys with them. But in the event of a serious reaction, there will not be time for a lesson over the phone. Anyone who is going to keep your children without you needs a full training on their allergies, emergency action plan, signs of anaphylaxis, and how to use an auto-injector. It’s a lot, but it’s critical.
3) Always carry two epinephrine auto-injectors. Yes, two. Every. Single. Time. My own son needed two shots of epinephrine during his first anaphylactic reaction. Sometimes you need more time before emergency help arrives and require a second dose if symptoms are not getting better. Sometimes the devices might malfunction. Sometimes you might mess up the delivery yourself by having it facing the wrong direction. Always have two with your child. At home, at school, everywhere.
4) Epi first and Epi fast. Benadryl will not treat anaphylaxis. And epinephrine is most effective when used swiftly. Know the symptoms of anaphylaxis and treat quickly. There is no downside to using epinephrine. There is only downside if you wait or don’t use it at all.
5) Lie down and call 911. One of the reasons my son likely needed a second dose of epinephrine is that the doctor sat him upright to listen to his chest and heartrate after administering the first. The epinephrine needs a clear pathway for blood circulation, so it is best to make sure your child is lying flat, ideally with slightly elevated legs, after receiving the shot. Stay put until medical help arrives.
And with that, DO NOT drive to the emergency room or pediatrician, no matter how close they are. (The rookie mistake I made…) Always call 911 for immediate assistance. Anyone who has had an anaphylactic reaction should be observed for at least four hours, in case of a biphasic (secondary) anaphylactic reaction and/or in case further treatments are needed.
The best part is…THERE IS HOPE! E.A.T. has launched a $1 Million Grand Challenge to End Anaphylaxis. According to the announcement press release: The Grand Challenge is the first in a series of challenges to address key areas in food allergy research and requires scientific collaboration across health conditions and within the investment community. The Challenge will accelerate ways to detect, prevent or better treat anaphylaxis -- a serious allergic reaction to stimuli such as food, medication, or venom and may be fatal if not treated quickly with epinephrine and evaluated by medical professionals.
Full disclosure: my husband is on the team of panelists reviewing submissions for the Challenge. The winners will be announced at the end of this month, so stay tuned! I am so thrilled that E.A.T. is propelling food allergy research and investment into understanding, treating and preventing anaphylaxis. We should not have to live in fear of food.
I pray that those of you reading this are have nots – that you haven’t seen anaphylaxis. But I hope you are prepared just in case you do. And for those of us who are haves – at least we can take some comfort that smart people are working hard to find answers and solutions to this terrifying aspect of food allergies.
*A reminder that I am not a doctor, just a food allergy mama doing my best to advocate based on my experiences and education. Please check out the links in this post for more detailed / sourced information. And always speak to your board-certified allergist with medical questions.