Saving Grace

Grace 4It may seem like an insignificant thing, but a peanut butter cookie changed Grace Denney’s life forever. Just a small amount of peanut butter triggered an allergic reaction that left years of anxiety in its wake—and eventually lead Grace and her mother Richelle to Boston Children’s Hospital’s Food Allergy Program—which they credit with giving them their lives back.

A sudden onset

Growing up, Grace had always avoided peanuts. There was something about their smell that bothered the young girl so much that she went her first seven years without tasting a single nut or eating even a spoonful of peanut butter. But all that changed one day when she was at a baking event for a local youth ministry group.

Preparing goods for an upcoming bake sale, Grace was part of a team of girls making several types of treats, including a particularly delicious smelling batch of peanut butter and chocolate cookies. Thinking her tastes may have changed, Grace helped herself to one. Moments later her throat felt very dry and scratchy, making it difficult for her to breath, which scared both her and the adults supervising the event. When Richelle picked her daughter up that evening and heard what had happened, she suspected Grace might have had an allergic reaction and quickly made an appointment with an allergist.

The next day Grace was given a series of tests, which confirmed she had food allergies to soy and peanuts. (These original tests also indicated an allergy to eggs, wheat, soy and dairy, but months later, additional tests showed no such allergies.)

“It’s a scary, life-changing diagnosis to hear your child has severe food allergies,” Richelle says. “It means constantly being on your toes in terms of what your child is exposed to. You really look at the world differently from that moment on.”

An unexpected set back

Grace 2The first few weeks after the diagnosis were hard. To stay safe, Grace had to become much more cautious of the world around her, which is a lot of responsibility for a child. Richelle had to adjust to her new life too. As parent to a child with newly diagnosed food allergies, she often found herself playing the role of bodyguard, food inspector and detail-orientated personal shopper, all at once.

“The first time I went to the grocery store after her diagnosis I was in there for a full two hours and came out with less than 12 items,” Richelle remembers.  “I was at a total loss for what to feed her.”

But in time things got a bit easier for Richelle. She bought food allergy cookbooks, went online to research the condition and connected with other food allergy moms via digital support groups. However, things weren’t quite as easy for Grace. She gradually became more scared of the possibility that she could have a severe allergic reaction (known as anaphylactic shock). The family experimented with the use of a service dog to help her feel more confident, and while it worked for a time, it was eventually deemed unsafe. Without the dog, Grace took a turn for the worse—she became too scared to leave the house and was generally uncomfortable anytime she wasn’t at her mother’s side.

To help accommodate her, a school a tutor was sent to the house a few days a week to teach her in the safety of her home. Eventually, she transitioned back to school in a separate, private space, for one-on-one tutoring. But during one session, she was exposed to traces of peanut in the room that caused a severe allergic reaction that required two epinephrine shots and a trip to the hospital. After that, Grace was too frightened to return to school, and her mother knew that a new treatment plan was needed.

“At that point, caring for Grace was about so much more than just treating her allergy; we needed help managing how it was negatively impacting her socially and emotionally,” Richelle says. “I began researching more advanced care for her, including allergists and food allergy psychologists. It didn’t take long before I realized that to get Grace the full range of care she needed, we had to go to Boston Children’s Food Allergy Program.”

A whole new person

At first Grace was nervous around her new care team. She was scared of hospitals and thought every person in a white coat was going to try to prod her or stick her with a needle. But within one or two visits with John Lee, MD, director of the Food Allergy Program and Jenny LeBovidge, PhD, psychologist in the Food Allergy Program, Grace started coming around to the process. It wasn’t long until she was making great strides, both at clinic and home.

“Dr. Lee was the first doctor who talked to Grace directly about her allergy and treatment, instead of talking through me. It really raised her understanding and comfort level,” Richelle says. “And Dr. Jenny is such a gentle and nurturing person. She truly understands how to communicate, listen and reassure her patients, which makes all the difference for a kid like Grace.”

Together Lee and LeBovidge created a customized plan for Grace that includes management of her allergy symptoms, teaching her coping mechanisms for allergy- related anxiety, and helping her understand and overcome social isolation she feels as a result of her condition.

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“For a lot of children like Grace, managing a food allergy is a bit of a balancing act between remaining vigilant about avoiding allergens while feeling in control of the condition and not overwhelmed by it,” LeBovidge says.  “Grace has done great on both fronts—she’s careful and aware of the world around her, but she isn’t letting her food allergies stop her from doing the things she loves.”

But it’s not just Grace who benefits from this multi-layered approach to treatment. Both Richelle and the staff at Grace’s school received instruction and education to make sure every adult in her life knows the best ways to keep her healthy and happy.

“There are lots of misperceptions about food allergies and how to treat them, so to keep kids safe, we need to do more to educate everyone in these children’s lives,” Lee says. “We should be building a community of support by engaging their teachers, school staff, classmates and other parents so everyone understands that rules designed to keep children with food allergy safe aren’t arbitrary. Awareness often leads to understanding, which can lead to these children having to deal with fewer social and emotional issues.”

Grace 3To this end, Lee has met with school nurses directly and spoken at the schools of patients to promote food allergy awareness. It’s a level of involvement that’s more in-depth than you’d find at most allergy clinics, but the extra effort has worked wonders for Grace, who’s now back at school, playing freely at friends’ homes and participating in extra curricular activities like ice-skating.

Remembering the timid person Grace was when she first came to Boston Children’s—too afraid of peanut exposure to even take off her coat and gloves in the examination room—Richelle says her daughter is almost like a whole different person these days.

“She’s not living in fear any more, she feels safe and that has brought her confidence back,” Richelle says. “As a parent that’s great, because as long as she’s OK, I’m OK. Her transformation has been a blessing for both of us.”

To learn more about our pediatric food allergy experts, visit the Food Allergy Program website.