Yes. We’re still here. I know things have gone dark since this past food allergy awareness lighting season. It takes an enormous amount of time and energy to make it all happen, and then a while to recover. We rolled right from the lighting season into the summer fun times. Our family has had some other challenges over the past few months, so I’m finally getting back to things. So please forgive me, and I’m going to try and get back at it.
We had a pretty full summer but the one spot that stuck out to me was my worst allergy nightmare. We are all still processing our first anaphylactic reaction “in the wild” since TealKid’s diagnosis 10 years ago. Within a week of his first birthday, he had what we now know were anaphylactic reactions to both dairy and eggs. At that time, we were given a prescription for epinephrine auto-injectors and headed to a board-certified pediatric allergist. We looked back at a few other things that had happened in his short life, and we saw he had issues with other foods as well. When tested, all those things were positive, as well a few we didn’t know about. Years later, I learned that this blanket testing wasn’t the best route, but we were new and didn’t know that was the case.
In the years since we have had several food challenges in the office. Some to determine if they were truly allergies, and others to see if he had outgrown them. We successfully passed challenges for fish, shellfish, soy, and baked milk. That’s pretty awesome, I think! We also had several failed challenges which resulted in anaphylaxis. While these were all done with our doctor’s close supervision in a controlled medical setting, it’s still not fun to go down that path. When we had those failed challenges, our doctor’s office handled treatment of the reaction. Looking back now, I do think it would have been nice to walk us through the treatment so we would feel more confident in handling those events on our own, but as we all know, hindsight is 20/20.
It was an absolutely beautiful Sunday in the middle of August, and we were fitting in one last quick trip before the start of school. A few hours away from home, in a city with enough to do, we made an overnight of it. I had checked out a restaurant in the area which had amazing reviews from allergy families. They had their allergy policy online. I showed my husband, as it was absolutely amazing. His words to me were “This place obviously gets it! Someone in their family must have allergies!” which he was right about. We spent the day at the science museum and then headed to dinner. We started as we usually do: by wiping down TealKid’s place and seat while talking to our waitress about what may be safe for him to eat. He asked for one of two things and she was going to check on them for us. During this time, she got drinks for our younger kids. She came back to discuss the options and brought TealKid’s drink.
Next thing I knew, I looked at him and he was super upset. I asked him what was wrong and what he said were the words I feared the most as an allergy Mom. “She put his drink in front of me.” This is where I say that we normally have a very strict protocol. TealKid sits on the end and next to the parents. That’s what we’ve always done, but on this day, we let the boys sit next to each other because they love baseball and there was a game on. When she came back with the third drink, she pushed TealTre’s drink in front of TealKid. The cups were opaque, so until he took two big gulps he had no idea they had been inadvertently switched, chocolate milk for water.
My heart broke but there wasn’t time for feelings at this point. He described that his throat felt like it did when his milk challenge went sideways. I asked my husband to map the nearest children’s hospital. TealKid looked terrified (which is a big indicator for us) and his skin was blotching up. I’ve been an advocate for many years, but at that moment I wanted someone to tell me exactly what to do. We have practiced. We have gone over his action plan. We have role-played. But this was show time. I took his epinephrine from his waist pack, asked him if he wanted to or if I should (he did not want to, I insisted he at least hold his hand over mine) and we injected him with the life-saving medication as my husband called 911. I tried to make him lay down, but he was fighting me. By this time there was a crowd gathered and onlookers all over.
It felt like forever for the squad to get there. Fire got there first and did a quick assessment and then EMS arrived. We were taken to the ambulance, then to the children’s hospital for observation. This was one area I failed in, for positioning and transportation information please check out AllergyHome’s resource as I did this all wrong. Once at the emergency department, and while under observation, he was started on the usual cocktail of post-reaction meds, with an added breathing treatment for wheezing he was experiencing. His vitals were stable, except for his O2, which was being closely monitored. The staff were super on top of things and made sure to tell him he did everything right.
I, the Mom, was off the rails. He was sitting in the bed watching baseball and soccer and just hanging out, while I was going through many emotions while not letting on what was spinning in my head. First thing I wanted to do was GO HOME! I wanted to get back to my bubble. Back where we know things. But what would that do to the family? I talked to TealHubs, and asked what he thought we should do. We decided to ask the kid. HE was the one who just went through this and we felt like the best thing we could do was follow his lead. We asked, and his first question was “What time will we get home tomorrow?” I wasn’t sure why he asked that until he said “Did you bring enough safe food with us? I will not eat out ever again.” My heart did a flip-flop. As an allergy Mom, I ALWAYS have enough rations for probably double the amount of time we will be gone so that was a big old CHECK! On the not eating out part, my heart broke. We do not go out to eat often, and now this one slip had undone much of the work we have done to get him somewhat comfortable with eating out. The fact that it wasn’t even the food part of it made it a little harder too, for some reason.
What surprised me was him. Through it all, he was strong and brave. Once it was over, he just wanted to move on. He wanted to stay. He wanted to carry on and do what we had come for. When I wanted nothing more than to go home and be “safe,” he showed me that he can adapt and get over it and carry on to a certain extent. He was ready to go to the hotel, get to bed, and start the next day (minus eating out). As a Mom, that resilience is something that I had always hoped he would possess, and apparently, he has developed that.
It was a late night. I didn’t sleep, but they all did, which was fine. I was out the door at 8 AM to find a pharmacy to fill the prescriptions we were sent home with. By 10 AM, we were on the road back to the museums we had set out to conquer and carried on with our food in tow.
We all learned a lot that day. To me, the most important thing was what HE learned. His words: “Epinephrine doesn’t really hurt, and it works super fast.” So that would be our silver lining in this. I am happy that he has that takeaway since it’s never happened out in the real world. I hope this has empowered him to know going forward that if he needs it, he has it, and knows how to use it for real. And that it’s a moment of “ouch” for pretty immediate relief. What I have learned is that he is far stronger that this Mom has given him credit for.