One in every 13 kids has food allergies and my son, Ryan, is one of them. I am a food allergy mom. I am always thankful that Ryan is healthy, but everyday I am worried. I am cautious. I am checking and double checking very single food item I buy. I bring Ryan home for lunch everyday. Halloween is terrifying for me. He can’t have treats at birthday parties and he has never eaten at a restaurant.
This week is Food Allergy Awareness Week and in honor of that I wanted to share some of our story.
Ryan, like my three girls, was a happy and healthy baby. He had eczema as a baby, but no one suspected food allergies because he was not having any other issues. I breastfed Ryan exclusively until 18 months and I ate freely, knowing later that much of what I was eating he was allergic to. At nine months I fed Ryan his first bite of baby yogurt, within 20 minutes we were at the ER and he was in anaphylactic shock. And that is really where the journey began. It was terrifying and of course heartbreaking that I caused this, even if unintentionally. Our pediatrician said not to worry, babies out grow dairy allergies all the time. I was not satisfied with that response and began the search for an allergist that would test him for other allergens. Believe it or not this was not easy. Many would only test for dairy and a few others said, he has allergies, just avoid. Again, I was not satisfied with this answer. We finally found many answers at the food allergy clinic at Lurie Children’s in Chicago and I am forever grateful that they discovered his anaphylactic allergy to egg as well as dairy. We thought it was just those two and had a plan to retest every year. And I could live with that. Keep monitoring until numbers decreased to do a food challenge. But, then Ryan had 2 life threatening reactions to nuts, so we added nuts to the list of allergens and blood draw after blood draw revealed the numbers were not decreasing, in fact increasing. We have had a food challenge (ingestion of allergen in doctors office) go well and we have had one go horribly wrong. I needed a better solution. I needed to find something more for him. We considered many traditional therapies or waiting for a treatment and for various reasons they weren’t the right fit. We will likely never know “why” Ryan has food allergies and my girls do not, at this point, it doesn’t matter and I try not to spend too much time down any rabbit hole in regards to the why. Now, I just work to be his advocate, help him navigate and search for treatment plans that will give him the best quality of life.
Thankfully, food allergy moms stick together and my friend and her daughter were so bravely working through a program in Southern California. I began to research, ask her questions, connect with other moms in the program and in the end decided to join the waitlist at Southern California Food Allergy Institute . The only clinic and doctors in the world using the TIP (Tolerance Induction Program) method. We were prepared for a 4 year wait, but do to Covid, they had openings and last summer we jumped at our chance to get Ryan started. If you would like to learn more about this program, you can find it here. Each patient has an individualized plan incredibly specific to his/her allergens and overcoming them with the end result being total food freedom–an answered prayer indeed. For the first time in our 7 year journey with food allergies, I feel hopeful and optimistic. It is not a quick fix and we currently fly back and forth from California every 8-12 weeks, which can be a tremendous amount to juggle, but our whole family is in this together. In between visits there are very specific foods eaten at very specific doses and times. Science is truly incredible! We cheer for Ryan when he has to eat foods he doesn’t love and we end each night telling him, “one day closer to no more allergies”. We are incredibly proud and amazed at the progress he is already making and know that although it is not easy, it will be worth it. Every child and family is so unique, this is not intended in any way to be medical advice, this is just our story. Please, of course, speak to your trusted physicians in regards to your specific case.
If you are a food allergy mom and you would like to talk about food allergies or this program, please reach out to me. I am more than happy to talk about this. You are NOT alone. Food Allergies are very REAL and for those of us in it everyday it can be so exhausting. If you do not have a child with food allergies know that you can be supportive of your fellow moms with kids with food allergies in so many ways! When having a playdate or event it feels so good when someone just asks what would be a safe food for him, so first option is to just ask means so much! Discuss it at home with your kids, help them to know ways to keep their friends with food allergies safe. Good handwashing is one simple way that makes a huge difference. Consider not allowing your kids to carry food onto public playgrounds, I know many children who have had a reaction from something left on a slide or ladder. If your school allows for treats consider non food items, it really makes all children feel included. We have the most wonderful community of moms and I am thankful everyday for each one of you! I do not share any of this for sympathy, only sharing with the hopes that this may help another family in some way.