Eli and I flew down to Long Beach for two days of appointments for his second trip. We were pretty nervous, knowing we would be learning the whole plan, going over testing results, and doing a few more tests before we got started.
In our first appointment they did two lung tests with Eli. The first was an ENF which checked for inflammation in his lungs, and the second was a PFT which measure the volume he could breath in and out. Once he was finished with those tests, they did one more test to see how he responded. It is called a patch test, where they put very small amounts of the actual food on his back, cover them with band aid type things, and leave it on overnight. He was not allowed to bathe, swim, be super active, etc. It can be scary to avoid a food your entire life, and then have someone put it on your back, even in a very small amount. Eli is so very brave.
We spent the day at the Long Beach Aquarium, we went to the grocery store to get food for our meals, we played video games and talked on the phone with our families. I thought sleep might be hard, but we were exhausted and slept well and got up the next day to go to his next appointment.
At this appointment, they removed the patch test and then measured the reactions on his back. Had the reaction been bigger, they would have changed the plan they’d made based on the other testing. Luckily, his reactions were standard for what they’d found in his other tests. They wipe off his back after they measure it, but also apply a cream to help calm the itching.
At this point, we did the first of many food challenges.
A food challenge is where he eats a certain amount of food that he has dosed at home, and then they take him to a gym where he gets his heart rate up for about ten minutes. This is challenging his immune system, a worst case scenario. At this appointment, he challenged two foods that we were confident he would pass- buckwheat and chia (both related to tree nuts). And he did. Going into the gym was an amazing experience, there were so many kids in there, I don’t think I’ve ever been around so many kids and families like ours. There is a certain kind of comfort there, a mutual understanding we all have about food allergies, it is the one place I’ve ever been where they know more about Eli’s condition than I do. Where their safety precautions are more than I would do, where families are respectful of the dangers of food. It was amazing! He passed both foods, and now he eats them every morning as a part of his maintenance foods (see first appointment for the distinction between all of the foods he eats!).
Anaphylaxis is unpredictable, but there are factors that make anaphylaxis more likely:
- Asthma
- Eczema
- Exercise (raising the heart rate)
- An overall high immune system load (this is why he takes so many environmental and seasonal allergy medications)
Then, they handed us the whole plan to go over together. The plan itself is around seven pages, printed on both sides, and in addition to that, they give us print outs of his test results. I have a binder with tabs where I keep all of this information, but it is way too much to share on the internet! It was so much information, and we had so much to do when we got home, that I will say I had very few questions for the doctor. Those came later, and we’ve learned to write them down and bring them with us to our next appointment.
