Food Allergies Impact the Whole Family
Having a child with food allergies can have a huge impact on family dynamics, family traditions, and travel. Serene, the mother of two teenagers with food allergies, works hard not only to manage these challenges, but to give hope to her family and countless other families like hers.
When her son Joshua was around 6 months, he had a severe reaction to the barley in his baby food. This led to the first of many trips to the emergency room. When the twins were 1-year old, Serene took Joshua and his twin brother, Matthew, to a local allergist to get a clearer picture of their allergies. Both boys were ultimately diagnosed to be allergic to multiple foods including dairy, eggs, wheat, soy, and nuts.
As the boys have grown, Serene has adjusted to managing meals, family traditions, and travel. She works hard to make sure, as she puts it, that Joshua and Matthew lead as normal a life as possible.
Serene describes some of her efforts around meals, “Every meal needs to be planned out carefully and we need to be extra vigilant around social events involving foods. We cook and host most Thanksgiving and Christmas dinners. This enables me control over the ingredients and to enjoy being with family and friends without worrying that the boys might have an allergic reaction.”
Travelling is difficult for their family, but she says they are not willing to give up quality family time and vacations. “Again, planning is key and we cook most, if not all, the meals during our vacation and pack for long day trips” said Serene. “In middle school, when they went on a school trip to Washington DC, my husband and I flew to DC with them, rented a room, made and packed them meals each day so that they could enjoy the trip with their friends.”
The family rarely eats out. But they have discovered 4 Japanese/Korean restaurants near their home where they are confident that the grilled foods they order are not contaminated with eggs, wheat, nuts, or dairy. For the family, eating at an unfamiliar restaurant is out of the question, as they worry that these restaurants are not equipped to cater to people with food allergies.
A decade ago, Serene sought the expertise of Dr. Nadeau at Stanford University. Although they had the opportunity to enroll both boys in the first food allergy immunotherapy trial with multiple allergens using Xolair, they decided not to enroll them at that time. Many factors can go into the important family decision to join a clinical trial. Serene acknowledges, “At that time, I was afraid and hoped that the twins would eventually outgrow their food allergies.” But, when the boys turned 12 years old and their food allergies had not subsided, she opted to enroll them in two different clinical trials at the Sean N. Parker Center for Allergy and Asthma Research at Stanford University.
The boys are now 14 years old and with the help of Dr. Nadeau and the team at the Center, the family has learned to live with and manage their food allergies.
Matthew just completed The Peanut Oral Immunotherapy Study: Safety, Efficacy and Discovery (POISED) study this past summer. The POISED study has 2 groups — one receives peanuts during immunotherapy while the other group receives a placebo. Having an active and a placebo group helps the researchers compare the effectiveness of peanut immunotherapy vs placebo. At the end of the trial, Serene learned that Matthew had been receiving a placebo throughout the study. She admits, “I was a bit disappointed that he got treated with a placebo rather than peanuts during the study, but we were told of the possibility right at the beginning and were aware of it. We are still thankful for being a part of the study and are glad to contribute to food allergy research.”
Joshua is currently enrolled in the Oral Immunotherapy for Wheat Allergy (Wheat OIT) trial, which he will complete in January 2017. Over the past two years, he has consumed escalating amounts of wheat protein, reached a maintenance dose, and then followed a protocol to stop dosing. When he returned to dosing, he could only tolerate a portion of his previous maintenance dose. He now continues to have appointments every few months to monitor his dosing. Although most individuals achieve desensitization with immunotherapy, many individuals like Joshua can become sensitized again if they stop regular consumption of the offending allergen. The Center is very interested in follow-up studies to understand why some individuals lose their ability to tolerate the offending allergens soon after discontinuation of their maintenance dose. Participants like Joshua provide valuable data that help the Center determine the mechanisms underlying desensitized and allergic states.
Irrespective of the outcomes of either clinical trial, Serene said the Center has really helped them manage their food allergies. “Dr. Nadeau and her team have changed our lives. They are truly dedicated to keeping my boys safe. You can tell that you are more than just a patient to them. Seeing how excited Joshua gets when he can eat something he could not eat before makes the efforts all worthwhile. We are now aware of some of the new therapies that are being tested and we are very hopeful that there will soon be an approved treatment for food allergy. It means a lot to have hope.”
I went into the clinical trial thinking that it would be a long, tortuous two years. I came out of it thinking, wow, this was the best thing that has happened in my life, right up on my list next to “discovering YouTube.” Before I went into this trial, I didn’t think that allergies were curable; I thought I had to live with them for the rest of my life. I got used to this, and just accepted my fate. When I started the clinical trial, endless possibilities and dreams popped up in my head. “Maybe I could eat pizza, or cake, or a hamburger!” I visited the hospital quite a bit initially. There were a lot of tests, blood draws, and missed school days, but as I got further into the trial, I only had to visit the clinic once every two months. Since the end of the trial, I am able to eat a piece of bread every day. This is a dream come true!
When I first heard about the allergy trial, I was scared. I always feared eating something I was allergic to, and the thought of intentionally eating an allergen scared me even more. When I finally joined the allergy trial, I saw that the doctors, nurses, and staff took very good care of their patients. This assured me that I would not die in the allergy trial.
The two years of the allergy trial passed by very quickly. Consuming the daily doses of “peanut” was merely a habit by the end of the first month.
Surprisingly, the commute to the hospital was not bad at all. The trial has given me hope that there will one day be a cure for allergies.
Interview by Vanitha Sampath
Vanitha Sampath received her PhD in Nutrition from the University of California at Davis. At the Sean N. Parker Center for Allergy and Asthma Research, as a medical writer and content manager, she enjoys being in the midst of groundbreaking research in asthma and allergy and is committed to communicating the scientific advances of the Center and spreading awareness of its mission and vision.