Visit 10
We are well into our current cycle of Luca’s food allergy treatment and as usual, he is killing it! We have been back from visit 10 for about 2 months and have lots of exciting news to share!
Luca passed his cashew challenge this past visit and escalated peanut. This means he has cleared ALL foods except for peanut, which he will continue working through until he is able to eat 50 or 60 peanuts without having an allergic reaction. It’s at this point that Luca would have “food freedom,” and truly be able to consume anything he wants, anytime he wants.
At treatment visits Luca introduces a tiny amount of one of his allergens, or a food with biosimilar proteins that helps him treat an allergen. If all goes well we go back home and over a cycle of anywhere from 8-12 weeks he will continue eating increasing doses of that food until we go back to California and he will eat a large dose followed by exercise. If he passes, that food gets moved to “maintenance,” which he eats every single morning for breakfast to maintain his tolerance to that food. During his visits he is also simultaneously introducing tiny amounts of another food that gets treated in the afternoons/evenings.
The Food Allergy Institute does initial bloodwork upon starting the program and then yearly to track how the body is responding to treatment. Ideally, they want to see that Luca’s body is becoming more tolerant of all the foods he has treated. If it’s trending in the right direction, they will decrease the frequency of how often he has to eat the foods he has in morning maintenance.
Kids with allergies are more susceptible of developing an allergy, or having an allergy “come back” if it’s not kept in their diet. Once Luca reaches food freedom, he will still have to keep these foods in his diet in some capacity. The eventual goal is that Luca will be able to eat all these foods hopefully just once a month to maintain his non-allergic status and to truly be able to eat and live like someone who was never allergic to anything.
We are always eager to get the results of his bloodwork back because we hope that some of the foods Luca has to eat daily will drop in frequency to 3x per week, or preferably, 1x per week. If this happens, it means treatment is working as planned and overall it’s a lot less that Luca has to eat and that we have to prep!
We got the results of his bloodwork last month and we’re thrilled with the news! Luca’s milk and yogurt maintenance moved from daily to 1x per week. This is HUGE news for us! Luca passed his milk challenge back in the fall, so he has had to consume 60 ml of cows milk every morning since then. Being that it is a daily maintenance food, he was not able to eat any dairy within 4 hours of his treatment foods. This “rule” you have to follow gets really tricky. I was always counting how many hours it had been since dosing his treatment foods to figure out if he could have dairy. It’s also tricky explaining to people that he technically passed a dairy challenge, but there are still many hours of the day that he can’t safely consume it.
Now that his milk and yogurt maintenance have been moved to weekly he can consume any kind of dairy ANYTIME he wants! It’s surreal. This, in addition to all the other progress he has made in the program, has opened up so many doors for our whole family and is drastically changing all our lives.
Something else in the bloodwork that caught me by surprise: Luca’s daily pistachio and cashew maintenance doses got moved to 3x per week instead of daily. These were both anaphylactic allergies for him, so I was really surprised that they already moved to 3x per week. This is really exciting because Luca doesn’t like them at all, and it was a struggle to get him to eat them before having to be out the door for school.
In addition to milk and yogurt 1x per week and pistachio and cashew 3x per week, he still has a whole big long list of nuts and seeds he has to eat on a weekly basis, and more he has to eat on a biweekly basis. He also has to eat 1 egg each week. This is all in addition to eating increasing amounts of peanuts each evening. So while there is still a lot to keep track of (you should see our spreadsheet!!), there are days during the week where Luca is able to eat a totally normal breakfast without any maintenance foods at all! There was a time when Luca was eating probably at least a dozen different nuts, seeds, and measured out amounts of different types of eggs and milk every single morning, so this kind of normalcy feels really wild.
Thankfully, dosing peanut has gone really well and Luca is tolerating it. Each week that passes Luca increases the amount of peanuts he’s eating each day and he’s becoming safer every week. This, combined with him getting older and being able to advocate for himself, has brought me a type of relief I haven’t felt in years. While we still need to read labels and be careful of certain things, being able to drop him off at school, or attend parties and get-togethers without such intense worry and stress is a game changer.
Gia tagged along with us on this trip! The kids had so much fun together and I’m so happy we decided to bring her. We did all our favorite things and spent a beautiful 70 degree sunny afternoon on the beach. A quick dose a vitamin D is what we all needed!
We were nervous about not making this trip with all the illnesses going around and the California wildfires. Although we did get glimpses of the fires a few different times while we were there, they thankfully did not impact our trip at all. It was sad for us to think about some of the incredible places we’ve had the opportunity to visit, burning so horribly. I can only imagine how devastating it is for all the families that lost their homes and belongings.
We are due to go back to California in April, where we will continue treating peanut! There’s lot of exciting moments coming up and we are so ready for them!
