The term “spina bifida” can create a lot of confusion among parents. It is often used as a catch-all word for many different types of congenital birth defects involving the spine. For example, spina bifida is commonly used as a synonym for a specific, more involved condition called myelomeningocele.
As an infant, Grace Beecher suffered from acid reflux, bouts of eczema and strep throat, leaving her parents struggling to comfort her and desperate to find the cause of their daughter’s ailments. 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 was life-changing,” says Karin Beecher, Grace’s mom. “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. After Grace’s diagnosis, Beecher began researching cookbooks, safe brands, specialty websites and educational opportunities – which is how she reconnected with Lisa Stieb, RN, BSN, AE-C, of the MassGeneral Hospital for Children (MGHfC) Food Allergy Center.
“Lisa was the nurse on staff at our very first allergist, the one who called to tell me that Grace was allergic to half a dozen common foods” says Beecher. “She was remarkable, spending over an hour on the phone with me, teaching me how to navigate my new reality. Years later when we switched Grace’s care to MassGeneral Hospital for Children and found Lisa, it felt like a happy coincidence.”
In March 2014, Wayne Shreffler, MD, PhD, chief of Pediatric Allergy and Immunology and director of the MGHfC Food Allergy Center recommended Grace 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 challenge 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. So far Grace has successfully passed three food challenges; a baked egg challenge in 2013, a peanut challenge in 2014 and an almond challenge in 2016.
“Having such significant allergies can sometimes be difficult. But, I’m lucky in the sense that I grew up like this. It’s just part of my life,” says Grace, now 13. “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.”
Beecher developed a straightforward, color-coded system to make sure Grace 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.
Grace continues to learn about her allergens and to grow as a self-advocate. With her family’s help and Shreffler’s guidance, she’ll work toward further easing food restrictions and the anxiety those allergens can cause. “Dr. Shreffler made me feel as though I have a say and some control in my care,” Grace says. “My opinion has value to him, and he takes the time to make sure I understand everything.”
Read more articles from the 02/23/18 Hotline issue.
- Press Release
- Sep | 8 | 2020
A new software program effectively brings the expertise of Massachusetts General Hospital (MGH) specialists to many more patients with Down syndrome (DS), according to a study published today in Genetics in Medicine.
- Aug | 31 | 2020
In this presentation by the Mass General Blum Center, Vandana Madhavan, MD, will review the latest updates on COVID-19 infections in children and multisystem inflammatory syndrome in children (MIS-C).
- Press Release
- Aug | 20 | 2020
Comprehensive pediatric study examines viral load, immune response and hyperinflammation in pediatric COVID-19
- Patient Education
- Aug | 19 | 2020
Follow these simple tips to help protect your children from the flu, plus what to do if your kids do get sick.
- Aug | 18 | 2020
Learn about the trainee experience at Massachusetts General Hospital, the original and largest teaching hospital of Harvard Medical School and the #1 research hospital in America.