EpiPen Adventure

This last week, I took Liam into the allergist’s office for a “baked egg” challenge. This challenge involved eating a muffin over the course of a couple hours, starting with super small bites and then working toward progressively larger bites. Every fifteen minutes they would take Liam’s vitals and offer him more of the muffin, all the while being careful to monitor any allergic reaction. Liam was doing great. He made it over two hours in. He made it until the very last challenge, which was to consume the rest of the muffin. However, right before he was to eat it, he threw up everywhere! He threw up everything he had eaten, all over me and all over himself, his blanket, and the chair we were sitting on.

Now, technically, according to FARE guidelines, because Liam had ingested a “known allergen” (the egg) and he had one severe symptom, as characterized by the vomiting, he should have been given an Epipen at that point. However, when the allergist examined him, he had NO other symptoms and was acting completely FINE. Because he was acting so fine, she said she would monitor him for an hour and if he didn’t develop any other symptoms, she would just send us home.

An hour passed and Liam continued to act normal. So home we went. However, as soon as we got home, Liam’s eye started swelling. I called the allergist and the dr. said I needed to give him an Epipen and go straight to the ER.

At this point, I panicked. I was still covered in puke, so I quickly jumped in the shower to rinse off and changed my clothes. Then I grabbed Liam, who was pretty upset and so tired and took him downstairs where I got out the Epipen.

I sat on the floor, held him between my legs and restrained him, and with shaking hands, administered the Epipen in his outer thigh. Luckily, the Epipens we have talk to you so I didn’t have to think, or count. It told me when to release the cartridge. I then grabbed a now-screaming Liam and put him in his carseat to take to the ER. Luckily, my mom was in town, and had been with me all morning. She had come for moral support but we didn’t know to anticipate how important her support would be! She quickly drove us to the ER while I sat with Liam in the backseat.

Within minutes of him getting the Epipen, Liam became pasty white and kind of, zoned out. He wasn’t non-responsive, but was eerily silent. His breathing was also a little shallow. I was so scared and told my mom to hurry. However, within a few more minutes, Liam’s color returned and he even started babbling to me, which helped me breathe easier.

By the time we got to the the ER, Liam was super calm. I rushed him in, while my mom parked the car, and knocked on the window and told the receptionist he was having an anaphylactic reaction. She immediately took us back. Pretty quickly, a doctor came in to look at Liam. I told him what had happened and that I had already given him an Epipen. The doctor looked at Liam and his vitals and said, “Well, this kid looks great.” Liam continued to be so calm throughout all of this. His calmness was an added blessing. I was overwhelmed with fear and adrenaline and Liam just calmly snuggled me in my lap, helping to calm my nerves.

They kept us at the ER for a little over an hour to watch him and also gave him an oral steroid before we went back home. Finally back home, for the last time, I put Liam down for a MUCH overdue nap (wearing the Owlet), and slowly, began to breathe normally.

I called Chad, who I had been communicating with on-and-off throughout the day. He was on a business trip in California. He was supposed to stay overnight for another board meeting the next day, but I asked him to fly home. This was hard for me to ask because Liam was doing fine and the danger had passed. I needed him home because I needed emotional support. Chad questioned his need to come home but when I started crying, he immediately agreed he would fly home and re-arranged his plans.

After the fear wore off, I found myself feeling defeated. I was hopeful this baked egg challenge would go well and that Liam could begin to progress toward overcoming at least one of his many food allergies. But instead, now we know he also has anaphylactic reactions to ingesting eggs, whereas before he would just throw up.

These food allergies are scary and overwhelming. We don’t have a follow up appointment scheduled with that allergist because she said you can’t try the baked egg experiment again for at least another 6 months to a year, and in the meantime, the recommendation is to simply avoid those foods.

We do have an appointment still scheduled for Liam to start the Oral-Immuno-Therapy in a couple weeks…but we don’t feel good about it. Or we feel scared and we aren’t sure if now is the best time to start that treatment. We don’t have great reasons to not move forward except that OIT isn’t standard care in the US and it’s possible something new and less risky can come on the market in a year or two. I also feel anxious when allergists don’t agree with one another, as the two allergists we have seen, disagree on treatment strategies.

I’ve also lost a little trust in this first allergist who gave Liam the baked egg challenge. She should’ve given him an Epipen in the office, or monitored us for longer than an hour. When she talked to me on the phone later that day, she admitted she thought that maybe she should’ve kept us for two hours. Now, I have an unnecessary and expensive ER bill to deal with. I’m not really mad though, even though I think I’d be justified if I did feel that way. Instead, I feel validated at how unclear decisions can be in these tricky situations!

This parenting gig can be rough. Especially when knowing what is the right decision to make for our baby. Especially when that decision involves his health and trying to prevent life-threatening reactions! It’s overwhelming, this responsibility to try to keep our kids safe and healthy and thriving!

Since Thursday, Liam and I have been together almost non-stop. There has been a lot of snuggles, and playing, and nuzzling, and breathing in all his baby-goodness. I am so grateful Liam recovered well from this event and that his reaction wasn’t worse than it was. I’m so grateful Liam is back to himself, and just as happy as if nothing ever happened. He won’t remember that event, but man, I sure will! Hopefully, it’s not an experience we’ll repeat anytime soon.

I do feel proud of myself though. When called on to be brave and take action, I was able to do it. Although, I’ll admit I definitely dropped a few swear words! I think (hope) the first time you give an Epipen is the scariest, simply because you don’t know what to expect. Now, I know a little more and that decreases some of the fear for having to use it again. But, like I said, I’d rather avoid having to do that again, if possible! Sometimes I get really tired of having to do hard, scary things! I’m not whining, I’m stating a simple fact of our life.

Breathing, and pressing forward…

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