A Parent’s Perspective on OIT

This week is food allergy awareness week. This week is also the last week of kindergarten for my peanut allergic daughter. The process of choosing a school for a child with a serious food allergy is difficult and, in the end, we chose a school that was not the best fit for our twins either academically or socially, but it was relatively progressive with allergy management (though not peanut free), and, most importantly, was located than 5 minutes from our home.

However, my children did not finish the year at that school. They will graduate from Kindergarten from a small Montessori school that is a wonderful fit for our family, that is nearly 30 minutes away.

What changed that I was suddenly comfortable sending my severely allergic child to school so far away from me? In October 2016, she completed a peanut desensitization therapy called Oral Immunotherapy (OIT). Through this process, she her body was desensitized to peanuts to the point that an accidental ingestion would not be a life threatening event.

There is a common misconception that OIT is available only within the confines of clinical trials, but, there are 50+ board certified allergists performing it in private practice, all around the country. The practice we saw has been desensitizing patients from common food allergens since 2008 and has a wall full of photos of smiling children who have graduated from this therapy. The process is similar to allergy shots, in that the patient receives progressively larger doses of the allergen until a state of desensitization is reached. The difference is that, it’s not a shot, and, the allergen dose is taken daily at home, after the initial dose in the doctor’s office, where the patient is observed after consuming the allergen. Though it feels scary, the dose escalations are in such small increments, and the patients are monitored so closely, the process is very safe. It’s also got an impressive success rate; about 80% of patients achieve a state of desensitization, meaning that their bodies do not react to their allergen(s). And some patients, after a long time in the maintenance phase actually reach a state of tolerance, meaning that their bodies can go long periods of time without consuming the allergen, and not reacting when they do consume it.

My daughter’s first dose of peanut protein, which was a solution of peanut flour and water, contained the equivalent of 1/1000 of a peanut. At the final challenge, she ate 24 peanuts without a reaction. In between, there were 20 trips to the allergist (who was located in Dallas, TX), and consuming the dose of the allergen twice daily at home, roughly 12 hours apart. Now that she’s completed the escalation phase of the therapy, she eats the equivalent of 8 peanuts daily, to maintain her state of desensitization. Each doctor has his or her own variation on one of the main protocols and the protocols can be tailored to each individual patient’s needs.

My child is still severely allergic to peanuts. Her 4 week follow up bloodwork showed her IgE was still very high, and she still carries an Epi-pen as a precaution. However, her body has been desensitized and, she eats peanuts daily without issue and is free to enjoy life as a non-allergic person would. I don’t read labels anymore. I don’t call restaurants and give them the third degree about how food is prepared and what’s in the kitchen. When there are treats at school, she’s free to enjoy them as any other child would. The last 7 months have been filled with all sorts of firsts for us – first festival food, first bakery cake, first time at Chick Fil A, and so many others. We make choices (such as our school decision) based on more factors than just the peanut allergy. Life is no longer about peanuts; peanuts are just a part of our daily life.

If you are interested in learning more about OIT, http://www.oit101.org/ is an excellent resource for locating a doctor near you (there aren’t any in Louisiana at this time – the closest doctors are Dallas, Birmingham and Atlanta), as well as reading research from peer reviewed articles about the overall safety and effectiveness of OIT. There are also a couple of facebook groups where you can chat with other families who have been through the protocol or who are doing it now.