Our son Alex had severe colic for the first 5 months of his life. He also had baby eczema, and wheezed when he got sick. But none of these conditions added up to allergies for our family—we simply had no experience with food allergies, so we didn’t connect the dots.
After Alex’s first tiny taste of scrambled egg when he was 1 year old, red hives covered his neck and face within 30 seconds, and he began drooling and acting distressed. We called our pediatrician, who told us to wait and see if the hives went away within an hour or so. Alex was extremely lucky he had a relatively minor reaction which did clear after an hour. However, looking back…we were completely unprepared. We didn’t have Benadryl or any other antihistamine in the house, and we couldn’t have helped our son had things taken a turn for the worse.
We were told by Alex’s pediatrician to wait until he was 18 months old before doing allergy testing, and to avoid the so-called “top 8” allergens just in case. After a battery of tests, it seemed that Alex had a slew of food allergies—including foods he was already eating (which didn’t make sense at all to us). He passed food challenges for some of the foods, but others looked potentially life-threatening in terms of severity.
Alex’s allergist said that there was a hope he might outgrow his egg allergy by age 5, but his multiple nut allergies were likely for life. We were sent away with some basic information, a couple of websites for reference, an emergency action plan, and an Epi-Pen prescription. It was beyond sobering and scary. And again, we were completely unprepared.
The feelings were overwhelming—how could we keep Alex safe? The more we read about food allergies, the more terrifying the situation became. We grieved for normalcy, and were forced to accept a new “normal”. It took a good two years to get used to this new and mysterious world of food allergies. Nothing was the same anymore. Daily life was scary and required tremendous energy and effort just to take care of Alex, educate family and friends, and avoid dangerous situations.
But worst of all was the feeling that there was no hope for a cure. Indications were that Alex would never outgrow his allergies to egg and nuts, based on his skin and blood tests results.
We were limited in so many ways –reading labels (EVERY time), no birthday cake, no deli foods, no buffets, no Halloween/ Valentine’s/ Easter candy, limited restaurant options, no Chinese/Thai/Indian food, no ice cream cones, etc. Often the only safe breakfast option at a restaurant was oatmeal—no pancakes, French toast, waffles, donuts, or omelets were safe for Alex.
His allergies impacted our friends and family as well. They were nervous to care for Alex in case they inadvertently made a mistake. School teachers did their best to accommodate his allergies, but we would often find out about special food treats or food-related classroom activities after the fact. Most people had good intentions, but unless they had to live with food allergies, they just didn’t get it. Alex had to be mature before his time, being responsible at a very young age for his own safety when we weren’t close by. Despite all of these challenges, we managed to keep Alex safe. But it was exhausting and a fatal anaphylactic reaction was an ever-present threat.
Flash forward 5 years… In 2010, we heard about Dr. Kari Nadeau’s food allergy research at Stanford. We had read about early work in oral immunotherapy (OIT), and were beyond excited to find out that cutting-edge research was being conducted in the San Francisco bay area. We had hope for the very first time that there might be a cure available someday.
We were so excited to get Alex screened for the peanut oral-immunotherapy trial—and were utterly crushed when Alex didn’t qualify for the study. His skin tests were “bad” enough, but his blood test results were out of the study parameters. Although we were disappointed, we still had hope that he might qualify for a study down the road.
A year later, we got a call back from the team at Stanford. They wanted to screen Alex again—this time, for a potential opening in a multi-allergy OIT trial. We were thrilled, since a multi-allergy trial would be so much more beneficial for Alex.
In the fall of 2011, Alex was screened for the world’s first multi-allergy OIT trial, conducted by Stanford. It was a bit nerve-wracking to do the double-blind placebo-controlled food challenges (DBPCFC), but the staff was incredibly supportive throughout the screening process, and we felt safe. Dr. Nadeau shared with us that skin and blood allergy tests are wrong half of the time, so we were intrigued to see if Alex was truly allergic—since he had never eaten these foods to our knowledge. The DBPCFCs confirmed that Alex was allergic to eggs, peanuts, cashews and pistachios.
Alex was accepted into the trial, and began taking his daily doses of the allergenic foods in January 2012. Talk about a strange moment—feeding your child the very thing you’ve avoided like the plague for 7 years! It was amazing to see Alex’s progress. Alex did have some minor reactions during the course of the trial, as can be expected. The reactions were manageable, and the Center's team was there for us all along the way, making sure Alex was safe.
Alex was fortunate to move into the multi-OIT with Xolair trial a few months into the study, and by August 2012, he graduated from the trial with flying colors. He now eats one whole egg (6g) and 4g of each nut daily with no reaction. He has thoroughly enjoyed eating his “firsts” so far: a peanut butter and jelly sandwich, French toast, brownies, Dim Sum, pancakes and dessert at a restaurant, and Grandma’s famous pumpkin pie and Christmas cookies.
We are amazed every single day at how far we’ve come. It’s now 7 months after Alex’s graduation, and that feeling still hasn’t worn off! There is no way our family can ever repay or thank Dr. Nadeau and the Center team that would adequately express how profoundly grateful we are. We no longer live in fear. The work that the Sean N. Parker Center for Allergy and Asthma Research at Stanford is doing has radically changed our lives for the better.
Although Alex is now in the “maintenance” phase of the trial, we are committed to supporting Dr. Nadeau and the Center, so that new therapies can be found and become available to other families just like ours. We are so proud to be part of this amazing research.