I know, when we were kind of new to the food allergy world, I googled and googled looking for anyone who would tell me what to expect, what this new diagnosis meant and how it was going to change our life. And unfortunately people sharing detailed descriptions of all of it is pretty rare. Or it’s only short little comments in forums. And let’s be real, reading forums generally makes me want to poke my eyeballs out. So that’s my goal with my “Our Food Allergy Story” series. I hope it helps those of you who deal with food allergies but I also hope it’s interesting and enlightening for people who aren’t. We have a long way to go in terms of awareness and regulation, particularly in terms of food labeling standards. So the more people who understand what it’s really like dealing with this, the better.
And of course, I want to say that you should NEVER NEVER NEVER attempt a food challenge on your own without medical supervision. I am not a doctor and this is just our experience, I am not an expert and you should not consider this to be medical advice. Please contact your doctor if you have questions!
I should start by explaining how we got to where we are now. If you haven’t read about how we found out about O’s allergies, the short version is that we fed him peanut butter after age 1 and his face swelled up. Then, when we visited the allergist they did a bunch of tests including a blood test which is called a RAST test. This is a test that measures the body’s response to allergens by measuring the production of the antibody IgE or Immunoglobulin E.
So when we did that test, O tested slightly positive for several tree nuts including almond and another couple. At that point, even though the number was low, because quite a few people who have peanut allergies also have tree nut allergies, our allergist said we should consider him allergic to all tree nuts and eliminate them from his diet. This all happened shortly after his first birthday so O has never eaten a tree nut in his life.
They usually repeat the RAST blood test once a year or so and when we had it re-done a couple of months ago, O’s numbers for almonds and the rest of the tree nuts had gone down so low that our allergist said he thought he was probably not allergic to them at that point and that we could try a food challenge in the office to test that. (Just for comparison’s sake, on the scale the lab we went to used, O’s allergic response to tree nuts originally was under 1 while his response to peanuts was in the 60s and has gone up since then.)
Now unfortunately, fun as it sounds, a food challenge is not some kind of Iron Chef event. It means that the person is given a very small amount of the potential allergen and then a little more and a little more over a period of time, all in the doctor’s office, so that if there is an allergic reaction, medical help is right there. I wanted to share what our food challenge was like because I was really nervous before we did it. (And seriously, I’m going to say this again, please DO NOT try this on your own.)
O was not allowed to eat anything for 3-4 hours before his appointment and we had to be sure he hadn’t had any antihistamines for 7 days beforehand. When you do a food challenge, you also have to bring the food with you. So in our case, we had to buy a special brand of almond butter that is produced in a completely peanut free facility (not all brands are, did you know that?). When we got there we signed a consent form, the nurse listened to O’s heart and breathing and than carefully examined his face, neck and torso, front and back, so she would notice if anything changed. Then she brought him a tiny piece of saltine cracker with 1/8 of a teaspoon of the almond butter on it. He ate that, drank some water, and then we turned on Finding Nemo and sat there and waited for 20 minutes with Aa and I anxiously scrutinizing his face pretty much every five seconds.
We did not tell O what was going on beforehand because we didn’t want him to be worried or confused, we just said we were going to have a snack and watch a movie, and the nurse also said it was a good idea not to ask him to tell us if he felt itchy or sick because for a lot of little kids once you put the words into their heads the power of suggestion is strong and then you don’t know if they really feel sick or they’re just saying they do because they heard you say it.
The nurse peeked in and looked at him every 10 minutes or so and came back after 20 for the next step in the challenge. First she repeated the exam by listening to his heart and breathing and examining his face, neck and torso. And this time she also took his blood pressure because for some people a drop in blood pressure is one (or the only) sign of an anaphylactic reaction. Then she gave him two little crackers with a total of 1/4 of a teaspoon of almond butter and a drink of water. And we waited for another 20 minutes.
We repeated this process two more times with 1/2 teaspoon and then 1 teaspoon of almond butter with the nurse examining him carefully between each one. At this point, there was no change and he had no reaction at all so he passed the food challenge! We were in the office for a total of about 2 hours. Our allergist sees a lot of kids so they have a dvd players and a good selection of movies in all the rooms but if yours doesn’t, make sure you bring something for your little one to do. It was a long boring event for him.
Now, as for what this means for us, O has the all clear for almonds but has still never eaten any other tree nuts. And people can be allergic to only some of them. So we will be repeating challenges with other tree nuts eventually before we ever give him any.
For now we will not be drastically changing our lifestyle/level of worry. We aren’t even really telling a lot of people that he’s passed the almond challenge. Not until we’ve made our way through more kinds of tree nuts. And even then, we’re still kind of processing how this will change things for us. Theoretically it should make life easier. We’ll be able to eat things processed in a facility with tree nuts and probably even have tree nuts in the house again (great news for a vegetarian!). But there will always still be the potential issue of cross contamination between tree nuts and peanuts both in products containing nuts but also in places like bakeries and restaurants. We will have to decide how we’re going to handle that.
But it is definitely good news and we’re very excited. I’m sure the #1 question we will get from everyone when we do spread the news is, “Great! Does this mean he will outgrow his peanut allergy too?” (Actually this is already the #1 question we get.) And the answer is a big NO. His numbers are so high that he probably will not. But anything that simplifies things is great!