Visit 1: Part 1—Launch
We just got back from our 2nd trip out to California. They call it the “Launch” visit and we learned it is the first of approximately 11 visits we will make to get Luca to what SoCal calls, “food freedom.”
This was a big visit for us and Luca had a total of 4 days of doctors appointments. On Luca’s first appointment he had what they call the Patch Test. Based on blood and skin testing and a comprehensive food questionnaire I filled out for him, they selected thirty-some different foods and they applied tiny samples of the actual foods to his back. He had to leave it on for 24 hours and could not bathe, sweat, swim, or scratch at it. The cells in the skin react similarly to the ones in the GI tract, so the test helps SoCal know what foods Luca’s GI tract may react to, if any. This can help them predict what symptoms Luca might experience with a reaction and which treatment foods he may need to eat with carbohydrates to avoid an upset stomach and/or vomiting.
The next day they took the patch off and peanut scored the highest. Luca had severe vomiting with a reaction to peanuts as a baby so we weren’t really surprised to see that. Then we got the information we’ve been waiting months for—through all of Luca’s testing with SoCal, they were finally able to tell us exactly what Luca is allergic to and how severe his reaction to these foods is likely to be. For those who don’t know, food allergy testing is often unreliable. Luca has only ever had a reaction to peanuts, but a lot of his testing showed possible allergies to other foods. We were advised to basically avoid most of it. We’ve done some food challenges and have cleared some of these foods, but we were largely unsure of exactly what he’s allergic to and how allergic he is.
SoCal breaks up foods into 3 columns. To the far left, is your anaphylactic allergies. These are serious and the patient is likely to have a severe reaction requiring an Epi pen and hospitalization. The middle column are the foods that your body is sensitized to. They can be things you are allergic to and avoiding, or in some cases, can be things a person has been able to eat in the past. The third column is what your body is tolerant to. These are all the foods you can eat that your body tolerates and that you do not react to. The goal is to move all the foods from the anaphylactic and sensitized columns to the tolerant column.
Luca tested anaphylactic to peanuts, cashews, and pistachios. Under the sensitized column were milk, eggs, and soy, and several other nuts, seeds, and legumes. A lot of the nuts, seeds, and legumes Luca has been eating regularly but the testing showed that his body is sensitized to it, so we will be treating many of them while we are in the program. It is important in the long run to tackle all the less serious allergies and sensitivities before tackling the big ones. It’s kind of like a ladder. You have to tackle the bottom rungs of the ladder to work your way up to the very top.
We asked question after question, went over all our emergency medications, and were told Luca likely has 2-2.5 years before he will be done in the program. It sounds like a long time but Luca will start Kindergarten in 2 years and the fact that he will be done, or almost done by the time he starts school gives me an immense sense of relief.
During our Launch week at SoCal, Luca completed and passed food challenges to almond, macadamia nut, pumpkin seed, and lentil flour. These were things he has eaten or tested negative or low to and are foods that are building blocks to get to the foods that he is more severely allergic to. Think of almonds, pumpkin seeds, macadamia nuts, and lentil flour as the “bottom rungs” to the ladder, with his anaphylactic foods being the “top rungs.”
He ate each food separately (mixed in melted chocolate!!) and then had to exercise and increase his heart rate for 5 minutes. Then we waited 15 minutes and repeated the process over for each food. A person is more likely to react to a food when they are active with an increased heart rate, so before they send him home eating this food every day they want to make sure he will not react when his heart rate spikes. They gave Luca the choice to jump on a trampoline or race up and down the halls and I think the racing was his favorite! He will now eat these foods in small amounts every single morning as his “maintenance foods.” The idea behind this is that it will build up a tolerance to the protein in these foods and later, when it is time to introduce the foods he is more severely allergic to, his immune system will recognize the similar proteins and not overreact.
Our final day in the clinic was introduction day. They introduced 3 foods to him in tiny amounts—pine nuts, coconut, and sunflower seed. He has eaten coconut and sunflower seed frequently for years but like the other foods, treating them is all part of the bigger picture. Introduction foods also have to be spaced out 15 minutes apart but instead of exercising after, you follow it up with a rest period. These foods will become what SoCal calls “treatment foods.” He will eat them every day at home, at least 4 hours after his morning maintenance foods. They will be dosed 15 minutes apart followed by an hour of rest.
Luca will continue to introduce new foods in the clinic, eat them in increasing amounts at home for several weeks, and then go back to the clinic to challenge those foods until each and every food is moved as close to the “tolerant” column as we can get them and he is freely eating all the food he is allergic to.
This program is fascinating, data driven, and complex. I’m so grateful I stumbled upon it. Now that we’ve started the program, I’m realizing just how time consuming it’s going to be. We have a lot of work ahead of us. For now, we are getting used to our new routine and taking things one day at a time. When things get hard, we are constantly reminding ourselves to keep our eyes on the prize: a life for Luca that doesn’t include food restrictions and Epi pens, but one that includes cheese pizza and PB&Js and scrambled eggs for breakfast. A life where Luca will be able to go to birthday parties and eat the same cupcake that everyone else is eating. A life where one day, Luca is living SoCal’s mission of food freedom—”to eat whatever he wants, whenever he wants, in unlimited quantities, without the fear of a reaction.”
This was a long and complicating read so if you were able to get through it all, thanks for reading along. The more the world understands about food allergies, the safer Luca will be. A more light-hearted post about all the fun things we did in California coming soon!