Visit 2
We’ve been back from Visit 2 for about 4 weeks now, and already beginning the process of booking our next trip out to California in late January. Whew, time goes fast!
This past visit, Luca had 3 days of appointments. Over the course of 3 days he challenged (and passed!) the 3 foods he had been treating the previous 9 weeks—coconut, pine nut, and sunflower. During this visit, he also introduced tiny amounts of mustard seed, brazil nut, denatured mare’s milk, and duck egg yolk. Egg and milk are known allergies for Luca so it was definitely a little surreal to see him eat those foods, even if they were teeny tiny amounts. We have always felt really comfortable during these appointments though, and we know we are in good hands. Luca was just fine and had no issues with the introductions.
In between all of Luca’s appointments we went to a couple different beaches, the aquarium, a fun children’s museum, and of course our favorite lunch spot!
If you’ve been reading along with our journey, you probably have an idea of how our visits go now. Each visit, Luca will challenge the foods he had previously been treating, and then introduce the foods he will begin treating once we get home. We usually schedule early morning appointments so we have the rest of the day to explore. We try to make these trips fun and Luca seems to love traveling to California. I’ve caught him on more than one occasion “playing California” in his room.
//
Traveling with a 3 year old and all of his medications and safe food is a whole thing and making these trips so frequently is A LOT, but it’s far from all we have to do for SoCal’s food allergy treatment program!
There’s a lot of stuff we have to do at home every day that nobody sees! Luca has so many different things he has to eat every day and there is a ton of prep that Gabe and I have to do, especially arriving home from one of our trips. It’s a ton of work but seeing the progress he is already making is so worth it. Care to join me behind the scenes???
//
This chart shows all the foods Luca needs to eat every week.
Each day Luca has to eat his morning maintenance foods. As of now, Luca has to eat 1 teaspoon of almond and pine nut, and ¼ of a teaspoon of lentil flour, macadamia nuts, pumpkin seeds, sunflower seeds, and coconut flour. We are instructed by the clinic on specific brands to buy. All nuts and seeds need to be washed, dried, and crushed prior to eating them. Rinsing them helps prevent the risk of cross contamination with any other nuts that may be processed in the facility that packages the foods.
I decided that instead of trying to coerce a 3 year old into eating weird nuts and seeds every morning, I would just mix them all up and make them into individual chocolates. It’s quite the process to make them, but Luca wakes up happily every day asking for his (very nutty) chocolate, so I call that a win!
Luca also has a whole bunch of recommended foods he has to eat 3-5x per week. They are:
Apple
Pear
Stone fruit (peach, plum, nectarine, cherries, apricot, or olives)
Chickpeas (8)
Chicken (1 oz.)
Beef (1 oz.)
All fruit servings need to be the size of his fist and they HAVE to contain the skin. In Luca’s case, the skin is the most important part of the fruit to eat! Sometimes we have to bribe him to finish his hamburger or his pear, but overall he does pretty well with these. He’s been eating all this stuff for several months now and I honestly just think he’s getting sick of them. He also knows he has to eat them and I think that plays into his resistance a little bit.
For fun: how many recommended foods can you spot in Luca’s lunch? ;)
Gia naps around 12:30 pm and that’s typically when we do Luca’s treatment foods. Currently, Luca is treating duck egg yolk, denatured mare’s milk, mustard seed, and brazil nut. Mustard seed and brazil nut dosing (for now) is in a gummy that’s sent home with us from the clinic so that doesn’t require any preparation from us. But the mare’s milk and duck egg yolk requires a ton of prep.
Treatment foods have to be given 15 minutes apart followed by a rest period of 1 hour (not always easy for a 3 year old). The whole process takes 1 hour and 45 minutes. Lactaid was given initially to ensure that if he had any GI symptoms, we would be able to determine if it was just a side effect from consuming dairy, or an actual allergic reaction. He does great without it now. Each of these foods increases each week until it’s time to go back to California to challenge a large amount of each.
There are lots of rules we have to follow as well. Luca tested moderately positive to dogs so Stanley and Gordie are not allowed to be in the same room as Luca when he does his treatment foods. So they get a little quiet kid-free time upstairs during this time!
He cannot eat any of his morning maintenance foods within 4 hours of treatment and he cannot eat any of his treatment foods outside of his actual treatment. So since coconut is a maintenance food, Luca’s favorite coconut milk ice cream sandwiches cannot be eaten within 4 hours of his afternoon treatment foods. And even though he previously was eating and tolerating mustard, he can’t have it at all currently, other than in his gummy. This rule has been a tough one. There are specific foods and brands I buy for Luca and when his list of “safe foods” grows smaller and changes every couple months, we’re constantly having to pivot and find new brands or substitutions. It’s also just so much to keep track of!
Luca also has to skip dosing if he’s sick or gets any vaccines. When we schedule appointments we add buffer days, assuming Luca will get sick at some point or another.
Overall, Luca does remarkably well with his treatment foods. He seems to actually look forward to “doing his foods.” He even eats all of these foods as is! I thought I might have to mix the milk and eggs into something, but he eats the duck egg patty straight out of the fridge and the mare’s milk right out of the syringe! We’re so proud of how he’s handling it all.
The last thing Luca has to do for the day is his daily antihistamine before bed. He’s on a pretty hefty dose to lower the histamine in his body but again, luckily for us, Luca loves medicine! It’s basically drinkable candy to him so we’ve never had a problem getting him to take it.
Prepping the mare’s milk and duck egg yolk took a lot of work from Gabe and I when we arrived home from this last visit.
The mare's milk comes in a powder form, like baby formula. You mix it up according to the directions on the container and to denature it, you have to bring it to a boil and then continue boiling for 3 minutes. This removes some of the protein that makes it allergenic. Then we let it cool, draw up the amounts we need for each week in syringes, and store in the freezer.
After trying to find duck eggs at 4 different specialty grocery stores, we then had to prep the yolks. Fun fact: the egg white is actually more allergenic than the yolk so we actually have to completely separate the egg yolk from the whites. We cracked the egg very gently (to leave the yolk intact), separated the yolk from the whites, ran it under warm water, and then let it soak in a bowl of warm water for a few minutes. We then transferred the yolk to a clean bowl and drew up the tiny amounts of egg yolk into a syringe and cooked the yolks in a skillet into little egg patties. This is all necessary to ensure that the egg whites are completely separated from the yolks.
We prepped all the mare’s milk and duck egg yolk patties that we would need for the next 11 weeks. And I’m super excited to not have to do this again for a while!
Gabe and I couldn’t help but laugh at how ridiculously complicated this all was. Never in my life did I ever think denaturing mare’s milk and separating duck eggs would be a part of my skill set.
But at our next appointment, Luca will be introducing hen egg yolk! To think that we will be able to make scrambled eggs for the kids on Saturday morning someday soon makes me more excited than I can say. And most importantly, every day Luca’s immune system sees these foods as less of a threat, and the world is becoming a little bit safer for him each and every day.