SoCal Here We Come!

My husband, 3 year old son, and I will soon board a plane and fly across the country for a doctor’s appointment. Yes, you heard that right. We are traveling from Ohio to sunny Long Beach, California, for a doctor’s appointment. The first of many, actually.

You see, our son was diagnosed with several food allergies as a baby, and our life has revolved around the restrictions and limitations of this diagnosis ever since. We’ve made some small strides here and there, but overall the last 3 years have felt like one step forward and two steps back. And to be frank, we’re just so sick of it. The constant label checking and the fear every time he tries a new food, or a new brand. The anxiety surrounding parties, holidays, and basically any social event. And the worry, the deep soul-crushing constant worry that our son will grow up in a world that is not only dangerous to him, but one where he constantly feels left out and different.

Since finding out our son had food allergies that scary day two years ago, the one that landed us in the hospital, I have made it my mission to learn anything and everything I can about food allergies. In the last two years I have done more research on food allergies that I can even articulate. I’ve downloaded apps, signed up for newsletters, and followed social media accounts that provided recipes, research, and information on how to live with food allergies. I’ve read about research studies, joined online support groups, and have scoured the aisles at the grocery store many times to find safe food for my son. This has been a really scary and uncertain journey for my husband and I and we carry a heaviness with us each and every day.

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Scrolling instagram one day I came across a page run by a girl in her 20s with several food allergies. I started following her and occasionally would see her stories and posts. She talked often about a food allergy program she had begun and after seeing that it was in Long Beach, California, I immediately dismissed it. If only we had something like that by us, I thought. I continued keeping up with her page though, and her journey in this program, fascinated by the progress she was making. She was slowly but surely outgrowing her allergies one by one. I began reading up on the program and I let myself daydream about what I thought was impossible. I imagined being able to just order a pizza for dinner one night when I didn’t feel like cooking. I thought about how much fun it would be to take my son out for ice cream. How much cheaper would our grocery bill be if I didn’t have to buy the $11 jar of almond butter, or the $8 jar of soy-free, egg-free, dairy-free mayonnaise?

I let myself think, just for a moment, that this program could be a possibility for us in the future. It felt good to pretend that there was a light at the end of this long, heartbreaking tunnel. 

The more I read, the more fascinated I became. I showed my husband everything I had found on it, still not fully allowing myself to believe it was an option for us. I read testimonial after testimonial of children and families from all over the world stating how The Southern California Food Allergy Institute changed their lives. 

The next few days were a flurry of informational phone calls, internet searches, and several conversations with the insurance company. The money, the time, the commitment. It all seemed like too much. But when you are faced with the thoughts of your son dealing with the stress, inconvenience, and danger of living every day with food allergies, it’s actually a really easy decision.

We signed up the next day.

We were put on a waiting list and just six weeks later we received a call that we had made it to the top of the waitlist.

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SoCal treats children through the Tolerance Induction Program (TIP). The plan is extremely individualized to each child. Socal’s goal is very straight-forward: “for all children to safely eat whatever they want, whenever they want, without the fear of a reaction.” The end goal is what SoCal calls “total food freedom.”

After individualized bloodwork and skin testing, SoCal prescribes a personalized treatment plan for each patient that includes a very specific diet with food-protein dosing at home in-between visits. SoCal finds biosimilar proteins an individual can eat without reactions, to gradually get their body ready to challenge the foods they are allergic to. For example, hazelnuts and peanuts have a biosimilar protein. So if someone is allergic to peanuts but can tolerate hazelnuts, SoCal’s plan may include a specific schedule for eating hazelnuts to prepare the body for challenging peanuts. 

There are plenty of allergists near us, but none that treat patients through TIP. If you’ve never had to live life with food allergies, it would be really easy to wonder why we would travel so far and so frequently for this. But after experiencing life with food allergies, we will do pretty much anything to prevent our son from dealing with this for the rest of his life. Luca is only 3 years old, but he is starting to notice now when others around him are eating something he can’t have. And with school fast approaching, figuring this out has become a priority for us. 

We will have to travel from Ohio to Long Beach, California, every 10-12 weeks the entire time we are in the program. On average, children are in the program 2-3 years but that differs for each individual and we won’t have our plan until our second visit. Luca will have to eat a whole list of different foods, every single day, multiple times a day. It will take a lot of organization and diligence to keep track of all the food he has to eat on a daily basis. Not to mention, trying to persuade a 3 year old to eat all these different things every day. I’m a little nervous about that.

This is going to be a long, and at times, difficult journey. But it is one we will tackle, together, one day at a time. We are equal parts nervous and excited. This program has given us so much hope and I look forward to documenting Luca’s journey to “food freedom.”