Team spirit: How working with an allergy psychologist got Amber back to cheering

A cheerleader is tossed into the air with one leg extended and arms raised.
After a choking scare, Amber developed avoidant/restrictive food intake disorder (ARFID) and had to pause cheerleading until she got help from her care team at Boston Children's Hospital.

A bubbly high schooler with lots of friends and a passion for competitive cheerleading: On the surface, Amber’s life looks perfect. She even knows what she wants to be when she’s older — a cosmetologist, because she wants to help people feel their best through beauty.

Her determination to help others is what drove her to seek help when she was faced with the biggest challenge yet.

Amber has eosinophilic esophagitis (EOE), an allergic condition that causes inflammation damage to the esophagus, and throat constriction that can lead to choking when eating. So when Amber had a scary choking episode last year, her family assumed it was related to EOE and took her to see gastroenterologist Dr. Erin Syverson and pediatric allergist Dr. John Lee in Boston Children’s Eosinophilic Gastrointestinal Disease (EGID) Program.

A scare that never went away

After her choking episode, Amber started to avoid eating completely. “I started to become afraid of eating anything — I was so nervous that I was going to choke again, and eventually I just stopped eating out of fear.”

Amber began losing a lot of weight, worrying her mom, Melissa. “She was doing competitive cheering, which is a physically demanding sport, and she was beginning to struggle to keep up with her practices. Her overall physical health was becoming worse, and I didn’t understand what was happening.”

A dog sits on a hospital bed beside a young girl.
As soon as Amber was admitted to Boston Children’s, her care team consisted of nutritionists, ARFID specialists, gastroenterologists, and an allergy psychologist to make sure she was getting the best care possible for her condition.

Watching from the sidelines

To address the trauma from Amber’s choking episode, Dr. Syverson recommended she see Dr. Sara Voorhees, an allergy psychologist on the team who works closely with patients with EoE and other food allergy conditions. After just one visit, Dr. Voorhees realized Amber’s situation was more serious than they thought.

“We tried to introduce soft foods, like pudding, into our session to see where her comfort level was and she completely froze,” she explains. As a result, Amber was diagnosed with avoidant/restrictive food intake disorder (ARFID), triggered by her choking episode. Children and teens with ARFID may limit the amount or types of food they eat due to sensory issues (the food’s appearance, texture, or taste), low appetite, or fear of choking, vomiting, or pain.

In coordination with a team of doctors, Amber was admitted to Boston Children’s. As soon as she arrived, her care team consisted of nutritionists, ARFID specialists, gastroenterologists, and an allergy psychologist. This multidisciplinary approach was used to make sure that no stone was left unturned to make sure that she was given the proper care she needed to regain her strength. 

Going full out to overcome fears

Amber was hospitalized for two weeks — putting her cheer activities on pause.  She first met with Dr. Elana Bern, co-director of the Avoidant/Restrictive Food Intake Disorder (ARFID) Program, who helped educate and support Amber and her family as they learned more about the condition and the plan on how to treat it.

Amber also worked closely with Dr. Dominique Egger, a clinical fellow in the Department of Psychiatry, to begin tackling her anxiety. “Dominique is incredible — she is one of the biggest reasons I’m better,” explains Amber.

Dr. Egger used a simple analogy to help Amber understand what was going on in her mind. “When I would think about eating, it was like a fire alarm was going off in my head — like when you’re in school. Your brain doesn’t know if the alarm is just a drill, or if there is a real fire, so everyone leaves the building just to be safe. Any time I would try to eat, my brain couldn’t tell the difference from choking and just swallowing, so it thought it was protecting me by avoiding food completely.”

How allergy psychology helped

In the EGID Program, an allergy psychologist, is part of the multidisciplinary team that works together to help each child achieve the best care possible. For Amber, working with Dr. Voorhees was key to helping her address her fear of choking.

The work allergy psychologists do is rooted in solving problems, overcoming barriers, and coming up with a plan at the child’s pace. For example, working with a patient to identify their triggers surrounding their fear with food, creating a plan to work through those fears the moment they present themselves, and learning how to cope through personalized behavior therapy.

Allergy psychologists also involve a child’s family unit in the recovery process. “We work with parents to help them better understand where their child’s anxieties stem from and how to help work through the scenarios that cause them stress,” explains Dr. Voorhees. 

A young girl smiles next to a light-up board that says "Amber" with a heart.
Amber hopes to help others experiencing ARFID overcome their fears and know that help is always available.

Amber is cheering you on

Once she completed her hospital stay, Amber met with Dr. Voorhees again to create a sustainable routine that helped her feel comfortable eating again at home and school. 

Amber’s plan included exposure therapy to slowly reintroduce foods, starting with the least anxiety-provoking foods in the most comfortable settings (such as soft foods eaten at home with her mother) and then working up to more challenging foods in less comfortable settings (like peanut butter crackers at school). This helped re-establish her confidence with eating and swallowing.

Amber also worked closely with Alixandra Krawcke, a nutritionist fellow, to make sure she was receiving proper nutrition and provided a safe space for her to eat some of her “safe” foods. “We talked about what we call ‘food chaining’, which is where we identify foods that are like safe foods, and still appropriately challenging”, explains Krawcke. “Amber was able to use the tools she learned from Dr. Voorhees to try these foods on her own, and she had her for support when the anxiety was too high.”

“Amber’s confidence and motivation to get better was apparent from the start of her treatment,” explains Dr. Voorhees. “She knew she was struggling but wanted to get back to being involved in school and cheerleading, so she just blossomed once she started having successes.”

Now back to cheering, Amber is continuing her high school career with the mindset of always wanting to help others — especially after seeing what her doctors did for her. “I want to be there for kids like me to show them that it is possible to overcome this. Just know you have an entire team backing you up to get you better, no matter what.”

Learn more about Allergy psychology, the Eosinophilic Gastrointestinal Disease (EGID) Program, and the Avoidant/Restrictive Food Intake Disorder (ARFID) Program

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