I realized I’ve shared about our trips to the SoCal Food Allergy Institute for Jacob’s food allergy treatment, but I haven’t shared what our day to day looks like, and really that’s where all of the hard work happens! So here goes, a day in the life of a TIP (Tolerance Induction Program) patient.
Sublingual Immunotherapy:
There are several treatment components to every day. The very first thing Jacob does when he wakes up each morning is take his SLIT. SLIT stands for Sublingual Immunotherapy. It is a liquid made of a combination of his environmental allergens as they relate to his food allergies. It is another component that helps prime his body to tolerate his anaphylactic (ANA) foods. His personalized formula contains things like cat hair, dog dander, and Timothy grass, among other things. We hope that by the time he graduates from the program, we’ll be able to get him a cat!
He gets 2 sprays under his tongue. He has to hold it without swallowing for 2 minutes and then wait another 10 minutes after swallowing before he eats or drinks anything else.
Morning Maintenance:
Once the 10 minutes have passed, he has his morning maintenance foods. These are the foods that he has treated and successfully challenged. He has to continue eating those foods regularly in order to solidify his tolerance. They are also the building blocks that are priming his body to be less reactive to his ANA allergens.
Each food is categorized by similar protein structures. For example the following tree nuts are related: pine nut, pecan, chestnut, walnut, coconut, and brazil nut. I like to think of them as “cousins”. Jacob is treating them in the listed order, which is specific to him based on his blood work.
In this grouping he has worked up to coconut and the ANA food in this category for him is the brazil nut. Since he is eating all of the nuts in this category on a regular basis, the goal is that when he gets to brazil nut, his body will be familiar enough with these similar proteins to tolerate the brazil nut without a reaction.
His current list of morning maintenance foods:
1x per week: chestnut flour, pine nuts
Daily: pecan, walnut, macadamia, duck egg yolk, coconut, chia seed, poppy seed, mustard seed, pumpkin seed, flax seed, kidney bean, and navy bean.
Because of the volume, this has replaced a “normal” breakfast. Thankfully he doesn’t push back often and is pretty easy going about it. We mix all of the seeds and powders into a little Enjoy Life melted chocolate and spread that onto a graham cracker. He eats his nuts whole and the beans plain. He eats the egg yolk in between 2 Lays chips.
On school days he eats them immediately after SLIT and it takes him about 30 minutes. On the weekends we usually let him start a little later and take as long as he needs. So far it’s been pretty easy. We’re hoping that after his next set of blood work coming up, many of these foods will drop to a few times a week or once a week.
Treatment Dosing:
The next part of Jacob’s day is treatment dosing. These are the foods that he introduced at the last appointment and is actively up-dosing each week. After dosing them for a given number of weeks, which we call a cycle, we return to the clinic to challenge them and they move to morning maintenance. So far his treatment cycles have ranged from 8-10 weeks. Currently his treatment foods are pistachio and hen egg yolk.
Treatment foods have to be eaten at least 4 hours after his maintenance foods. We try to dose around 4 or 5 pm. It varies a little depending on what we have going on in the afternoons. During his dosing period he has to avoid elevating his heart rate, getting too hot, hot baths, etc. He has to stay calm and relaxed which isn’t always easy! This is because we don’t want to potentially trigger a reaction. We have to wait 15 minutes between each food and once he’s eaten his last food we have to wait 1 hour. So the whole process for us takes 1 hr 15 min to 1 hr 30 min, depending on how many foods he’s dosing. During this time he usually plays with toys or his iPad. Sometimes we dose in the car to maximize our time.
Recommended foods:
Last but not least, Jacob has a list of what are called recommended foods that he has to eat 3-5x per week. Recommended foods also share similar proteins to his allergens and thus also help prime his body to be less reactive. His recommended foods are pear, apple, stone fruit (eg. cherries, peaches, and plums), pinto bean, and guar gum (which he hates).
Weekly Prep:
I prep for 7 days at a time on Sundays. There are a lot of moving parts each day but we have a good flow and hope to continue it!
Disclaimer:
All of these foods are consumed in very specific amounts based on Jacob’s individualized plan. Please do not attempt this at home! Jacob is under the care of a team of doctors and his plan is tailored to him and only him!