Our FPIES Diagnosis Journey

We have been a bit MIA lately, but there have been a lot of things happening. First, I would like to start where we left off. There were so many questions about what was happening with George, and we have finally gotten our answers. It wasn't smooth sailing getting our diagnosis. We had an unsuccessful appointment which landed us in the hospital again. I had to advocate for George and then got him into another appointment, which led to his diagnosis of FPIES. With this new knowledge, we have our next steps, but we still have to be cautious.

First Allergist Appointment

In February, we had an appointment with an allergist. We were pretty nervous heading into this appointment as we weren't sure what to expect. Unfortunately, it was not a great experience at all. Once we were called into the room, they performed the scratch test on George's back. They did not use any markings at all to help distinguish between the egg and the control, which seemed a bit weird to us.

After 15 minutes, the allergist came in to check the results of the test. It showed no reaction, and the allergist told us that George is not allergic to eggs. This brought up a lot of questions for Brandon and me. When trying to get an understanding of why this happened, the only response we got was, "He's alive, isn't he? You can give him eggs again." We were then told we could leave. This was very unsettling, but we thought, okay, maybe it was just a fluke and George is okay with eggs.

Reintroducing Eggs

The day after the appointment, with the go-ahead from the allergist, we gave George eggs for breakfast. Things appeared okay, but we were being watchful as the last time it took an hour before anything happened. Sure enough, the exact same thing happened. An hour after eating eggs, I went to breastfeed George and he was projectile vomiting again. As soon as we saw that, we were off to the hospital again.

I was so mad because I felt that we were misled, and now George was suffering again. At the hospital, we explained again what happened to the doctors, and they advised us not to give him eggs again until he was 2. George was given anti-nausea medication, and it helped him. After a few hours, we were able to go home.

They didn't really have an answer for us, though, on why this was happening. We were more confused now, and I just knew that we needed to try a different allergist. I called up our family doctor and got a referral for another allergist.

New Great Allergist

Heading into this appointment, I was so worried. The last one didn't go great, so I was very cautious, but everything leading up to this appointment was already a million times better. Upon arrival, the allergist wanted to perform a scratch test himself. This time it was done on George's arm, and they actually marked what was what. That alone made me feel better. After waiting for the scratch test to take effect, we met with the allergist to talk about everything that had happened.

He looked at George's arm and saw that the scratch test was showing he wasn't allergic to eggs, but that's not completely true. Based on George's symptoms, he was able to diagnose George with a rare allergy called FPIES (Food Protein-Induced Enterocolitis Syndrome). From what we were told, this can be triggered by any food (for George it's eggs), and the reaction is delayed, usually occurring one to four hours later. It is hard to diagnose because traditional scratch tests do not work, as it's not a regular allergy. We were advised that most kids grow out of this by the time they are going to school.

What's Next? 

The allergist explained to us that there isn't much research done on FPIES, so it is unknown exactly when George will grow out of this. It is also unclear if giving George eggs baked into something (like cake) would cause a reaction or not. So for now, we will be avoiding eggs altogether. We will be looking at all the labels now because we just don't know what will have eggs and what won't.

Then in September, we have an appointment to go back and do a three-hour food intolerance test in the office. We will be looking to see what his reaction is at that time. We may get more information from this test, but it would be nice to see if he's still allergic or if he's grown out of it. In the meantime, our allergist gave us a prescription for anti-nausea medication in case we have an accidental exposure.

Hope for the Future

This whole experience has been tough to go through, but I am so glad I stuck to my guns and didn't stop until we had an answer. It was stressful, and I felt so bad when George had another reaction. In the end, finding this new allergist made all the difference for us. He was so educational and helpful in easing all our concerns. We have a plan for the future, and that is all we truly wanted out of this.

Our poor little man has had quite the time, but it's comforting to know he will likely grow out of it. For now, we wait and hope things get better over time.