When it comes to being active, there is no stopping Caroline Spaulding. Whether speaking on behalf of inflammatory bowel disease (IBD) legislation on Capitol Hill, performing in a ballet recital or lacing up her cleats for a soccer game, Caroline, 13, is a force to be reckoned with.
Her strong sense of determination is what carried her through her Crohn’s disease diagnosis and the 12-week, formula-only treatment plan — exclusive enteral nutrition (EEN) — that followed.
“When I was nine years old, I stopped growing and started losing weight,” Caroline recalls. “I wasn’t experiencing any pain or diarrhea, which made it so much harder to diagnose my Crohn’s disease.”
With Caroline’s fragile weight in mind, she and her mother, Erin, made frequent trips to their Connecticut-based pediatrician and saw numerous local specialists.
“We were referred to every ‘ologist’ imaginable — we saw a rheumatologist, nephrologist, psychologist, oncologist,” Erin recalls. “Gastroenterology was our last stop.”
A year and a half after the onset of her symptoms, Caroline was diagnosed with Crohn’s disease.
“I had a colonoscopy and they found inflammation in my small intestines,” she says. “That’s when they found the Crohn’s.”
Once diagnosed, Caroline’s local specialist recommended steroid medications to reduce her intestinal inflammation. Unfortunately, the 11-year-old needed to stop the treatment because “she had every side effect on the bottle and then some,” her mom recalls.
Time for change
The Spauldings reached out to the Boston Children’s Hospital Inflammatory Bowel Disease Center for a second opinion. “When we got to Boston Children’s, our gastroenterologist told us that Caroline was terribly malnourished and confirmed the Crohn’s disease diagnosis,” Erin says.
A team approach to EEN and IBD care
In addition to Dr. Silvester, Caroline receives care from a team of experts including dietitians, nurses and social workers. “An important reason why I love the approach at Boston Children’s is because EEN was Caroline’s choice and the plan was presented to her in a way she could understand,” Erin says.
For 12 weeks, Caroline carried a small but life-changing backpack which contained formula and a pump. Through a nasogastic (NG) tube, Caroline received a steady flow of the nutrients and calories she needed to help her to grow and thrive.
“Caroline’s clinical response to EEN was very robust,” Silvester says. “She gained weight and strength, and her Crohn’s disease got better too.”
Throughout her EEN journey, Caroline had an army of friends and family supporting her. “At lunch, my friends would bring me gum to chew and at home, we had ‘Epic Sundays’ where I would get a weekly reward for staying on track,” Caroline says with a big smile.
EEN didn’t slow Caroline down. When it was time for sports or to perform in a recital, Caroline simply disconnected the pump and inconspicuously tied the NG tube into her braid or bun. “EEN gave me the energy to do the things I love to do,” Caroline says.
When the 12-week program ended, Caroline, who gained 17.4 pounds and grew nearly 3 inches, knew exactly what she wanted to eat. “I ate a pickle and that’s all I wanted,” she said.
Transitioning off EEN
The next step in the process was to gently wean Caroline off the formula and reintroduce solid food. Dr. Silvester and Boston Children’s IBD dietitian, Karen Warman, put her on an 80/20 diet consisting of 80 percent formula and 20 percent anti-inflammatory diet, also called a “clean” diet.
While at home, Caroline utilized an online food diary called Cronometer. This daily log allowed her to share dietary information with Warman who then reviewed the log and determined if her dietary needs were being met. Weeks into the weaning process, Caroline’s IBD team cut her formula intake to 50 percent and slowly expanded her solid food intake.
“During my visits with Caroline, we discuss which foods she is missing and help to find suitable alternatives that meet a healthier profile,” says Warman, one of two IBD dietitians who still treats Caroline today.
Using her time and voice to increase awareness
Now, nothing is slowing Caroline down.
Since her diagnosis and time on EEN, Caroline has led the charge in building IBD awareness. Her friends — a.k.a. “The Warrior Squad” — joined her in a walk for IBD, and she traveled to Washington, D.C., where she spoke before the Senate to increase IBD and EEN awareness. This summer, she attended the Crohn’s and Colitis Foundation’s Camp Oasis, a camp specifically for children managing Crohn’s disease and ulcerative colitis. A staff doctor at Camp Oasis, Boston Children’s gastroenterologist Dr. Naamah Zitomersky was able to provide continuity of care by preparing Caroline’s shakes throughout the summer.
When reflecting on her journey, Caroline’s advice to other children going through EEN is powerful: “Get creative with it, stay strong and use humor to get through the hard days,” she says.
Learn more about Boston Children’s Inflammatory Bowel Disease Center and our approach to care.