As an infant, Grace Beecher’s parents found her difficult to soothe. It was obvious to the new parents that their daughter was uncomfortable; she suffered from acid reflux and bouts of eczema and strep throat. Her parents were desperate to find relief, even sleeping sitting up to console their child. After multiple visits to their physician, Grace was diagnosed with numerous food allergies at 5 months old.
“Understanding Grace’s allergies and being prescribed preventative medication at age 3 was life-changing,” says Karin Beecher, her mother. “Suddenly, we uncovered this little person as her chronic discomfort disappeared. That was a transformative moment for our family.” However, their journey to tackle those food allergies and keep Grace healthy was just beginning.
Grace was allergic to wheat, dairy, eggs, tree nuts, peanuts and sesame, making food choices difficult. Her weight was, and continues to be, below average, but her family has found ways to ensure Grace has her nutritional needs met. Avoiding food allergens is paramount in the Beecher home. Once overwhelmed by how to safely feed her daughter, Karin jumped into action after Grace’s diagnosis.
Researching Food Allergies
Researching cook books, safe brands, specialty websites and educational opportunities became her full-time job – and that’s where she reconnected with Lisa Stieb, RN, BSN, AE-C, of the MassGeneral Hospital for Children Food Allergy Center.
“Lisa was the nurse on staff at our very first allergist,” says Ms. Beecher. “She is the one who called to tell me that Grace was allergic to half a dozen common foods. She was remarkable, spending over an hour on the phone with me, teaching me how to navigate my new reality. I often say that she ‘taught me how to fish’ during that call. Years later when we switched Grace’s care to MassGeneral Hospital for Children, I found Lisa. It felt like a happy coincidence.”
Ms. Stieb not only has more than 30 years of nursing experience, 18 of those dedicated to pediatric allergy and pulmonary care, but also has two children of her own with food allergies and understands the Beecher family’s lifestyle.
A food challenge is the most definitive procedure for testing whether someone can tolerate a specific food.
A Cutting-Edge Approach
In March 2014, Wayne Shreffler, MD, PhD, chief of Pediatric Allergy and Immunology and director of the Food Allergy Center at MGHfC, recommended Grace to participate in a cutting-edge approach to food allergy management: food challenges.
A food challenge is the most definitive procedure for testing whether someone can tolerate a specific food. The four-hour long procedure involves giving the child increasing amounts of a food every 10-20 minutes followed by an observation period. Physicians can control the environment and treat a reaction should it occur.
In 2013, Grace passed a baked egg challenge and in 2014, she successfully completed a peanut challenge. Although cleared to eat peanut butter, the 12-year-old didn’t like the texture and flavor initially, but has since integrated both peanut and baked egg into her diet, opening new food possibilities.
“Having such significant allergies can sometimes be difficult. I don’t know what ice cream or traditional cakes taste like. But, I’m lucky in the sense that I grew up like this. It’s just part of my life,” says Grace. “My mom has done an amazing job. She always finds another, safe food option for me. Whether it’s a birthday where I get red velvet cupcakes or special pancakes, I’m not left out.”
Ms. Beecher developed a straightforward, color-coded system when Grace was small to make sure she could independently make safe food choices and to make friends and loved ones aware of her options. “Green is good, green is go, green is for Grace” has become the family motto. And that list is expanding. In the fall of 2016, Dr. Shreffler conducted an almond challenge that Grace successfully passed. Although participating in a food challenge causes anxiety and stress, Grace knows that their results are the only definitive way she can confidently eat items containing her known allergens.
“Dr. Shreffler made me feel as though I have a say and some control in my care.”
Advocating for Herself
Grace continues to learn about her allergens and grow as a self-advocate. With her family’s help and Dr. Shreffler’s guidance, she’ll work toward easing food restrictions and the associated anxiety those allergens cause Grace and her family.
“Dr. Shreffler made me feel as though I have a say and some control in my care,” she says. “My opinion has value to him and he takes the time to make sure I understand everything. He was the right doctor for me at the right time and is now my partner in navigating this.”
For more information about how you can support the Food Allergy Center’s research into new treatments, please contact us.