Once we received Jonathan’s food allergy diagnosis and figured out how to navigate our new life as a family, we began to wonder if he would outgrow any of his allergies or if any treatment opportunities existed out there. The chances of Jonathan outgrowing his food allergies are the greatest for milk and egg. However, after blood work he had done last fall his allergist said even this was unlikely. The chances of him outgrowing his allergies to peanuts and tree nuts are slim. He will most likely deal with these food allergies for the rest of his life.
With this in mind we began to wonder if any treatment opportunities existed. With the advancements in modern medicine and all the things it could do surely there had to be a way to treat these food allergies? The most widely used way to “treat” allergies is through oral immunotherapy or OIT. This practice is most widely use for some the top 8 allergens including milk, egg and peanuts. It involves dosing a small amount of the allergen at the allergist’s office, then continuing this dose at home for a certain amount of time before going back to the allergist to increase dosage.
My knowledge of this practice is relatively limited as Jonathan never participated in OIT. We decided he was too young at the time and wanted to wait until he was older. We also know the practice most likely would not have been covered by our insurance provider, so we would be paying out of pocket.
Price and age aside, our biggest hesitation with OIT was the time frame (3 years for peanuts) and the fact that he would have to eat a certain amount of peanuts every day for the rest of his life. Yes, the benefits of worrying less about an accidental ingestion were great, but we weren’t sure of how practical this would be in perpetuity for Jonathan.
We searched further and further looking for specialists across the country – just like any parents of a child with a life changing disease. We were looking for a way to get him the best help regardless of where that might be.
It wasn’t until Ken’s brother mentioned the Southern California Food Allergy Institute (SCFAI) to him did we really start a conversation about what it could mean for Jonathan and our family. He knew someone in the D.C. area who had completed the program and was now able to eat freely. Admittedly, I had come across their website in some of my research, but saw it was in Long Beach, CA and figured it was too far away. It wasn’t until we looked into it more and realized how many people come from all over the world to participate in this program that maybe it was a viable option for us.
The Southern California Food Allergy Institute (SoCal Food Allergy) has a food allergy treatment program called the Tolerance Induction Program (TIP). The program is tailored to each individual patient with the end goal of true food freedom for the rest of their lives. The ability to eat what they want, whenever they want and as much as they want without having a reaction. The program has been around for more than 13 years and has treated thousands of children. As a parent of a food allergy child this is music to our ears.
One of the best aspects of the Tolerance Induction Program is the ability to treat ALL of Jonathan’s allergies, not just his main ones of peanut, milk or eggs. The other aspect of the program that is amazing is the food freedom. Giving him the ability to be a normal kid growing up without having to sit at a special table or get a special snack and feel like an outcast is priceless.
We decided to put Jonathan on the wait list at SoCal on June 25, 2019. He was ~#2300 on the list and was told it could be about 18-24 months until he was at the top of the wait list. We figured we might as well get on the list before it got even longer and thought he would be at an appropriate age by then to successfully complete the program.
After a lot of excessive checking on his place in line on my part (sometimes I checked multiple times per day – I’m impatient!) we received the financial agreement on January 31, 2020 and I received news that we had reached the top of the wait list on February 11, 2020 several months earlier than anticipated.
Reality really started to settle in around the first of the year after a large jump in the wait list. Our turn was much closer and we had to figure out how we were going to make this work for Jonathan and our family. We had a lot of items to figure out including how much was this really going to cost, how would we pay for it, how would we go to California so often and would we be able to successfully dose at home?
I’ll discuss all of these questions and more in an upcoming post about our logistics surrounding treatment at SoCal.
As always, let us know below if you have any questions or comments!
