Caroline’s life-changing backpack

<img class="wp-image-33518 size-full" src="" alt=" Girl being measured in the doctor's office before the appointment EEN "width =" 800 "height =" 532 "/> Caroline at a recent appointment to have her height and weight checked

When it's about being active Caroline Spaulding Whether on behalf of the Law on Chronic Inflammatory Bowel Disease (19459002) on Capitol Hill, in a ballet recital or in her crampons for a football game, Caroline, 13, is a force to consider with.

His keen sense of purpose is what led him through his diagnosis Crohn's Disease and the 12-week treatment plan, unique formula – exclusive enteral nutrition (EEN) – who followed.

"When I was nine, I stopped growing and started to lose weight," recalls Caroline. "I did not experience any pain or diarrhea, which made it much more difficult to diagnose my Crohn's disease."

With Caroline's fragile weight in mind, she and her mother, Erin, made frequent trips to their Connecticut pediatrician and saw many local specialists.

"We were referred to every imaginable" ologist "- we saw a rheumatologist, a nephrologist, a psychologist, an oncologist," recalls Erin. "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 intestine," she says. "It's when they found Crohn's."

Once diagnosed, the local Carolina specialist recommended steroid drugs to reduce her intestinal inflammation. Unfortunately, the 11-year-old had to stop treatment because "she had all the side effects on the bottle, and then on some others," recalls her mother.

The Hour of Change

The Spauldings reached out to the Boston Children's Hospital Inflammatory Bowel Disease Center for a second opinion. "When we arrived in Boston Children's, our gastroenterologist told us that Caroline was terribly malnourished and confirmed the diagnosis of Crohn's," says Erin.

Under the direction of gastroenterologist Dr. Jo celyn Silvester Carolina's treatment plan changed gear and she was introduced to EEN.

<img class="wp-image-33519 size-full" src="" alt=" Daughter with an IBD Doctor "width =" 800 "height =" 532 "/> Dr. Silvester and Caroline

A Team Approach to Care for EENs and Patients MII

"EEN is prescribed to calm intestinal inflammation when a patient is diagnosed as a" bridge "with another treatment when a patient relapsed or in addition to other anti-inflammatory treatments to help to growth. " ~ Dr. Naamah Zitomersky and Dr. Bridget Hron Gastroenterologists and Team Leaders EEN

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 of Boston Children, is because EEN was Caroline's choice and the plan was presented to her in a way that She could understand, "says Erin.

For 12 weeks, Caroline wore a small backpack that changed her life and contained a formula and a pump. Through a nasogastric tube (NG), Caroline received a steady stream of nutrients and calories that she needed to help her grow and thrive.

<img class="wp-image-33520 size-full" src="" alt=" Carolina at the art class after EEN for IBD "width =" 800 "height =" 532 "/> Caroline in the art receiving EEN treatment by her NG tube

" The Caroline's clinical response to EEN was very robust, "Silvester says," She gained weight and strength, and her Crohn's disease improved too. "

Throughout her trip to EEN, Caroline had an army of friends and family to support her. "At lunch, my friends brought me chewing gum and at home we had" Epic Sundays "where I received a weekly reward to stay on track," says Caroline with a big smile.

EEN did not slow down Caroline. When it was time to play sports or play a recital, Caroline simply disconnected the pump and discreetly tied the NG tube into her braid or bun. "EEN has given me the energy to do the things I like to do," says Caroline.

When the 12-week program ended, Caroline, who took 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.

Transition of EEN

The next step in the process was to gently wean Caroline and reintroduce solid food. Dr. Silvester and Boston Children's IBD dietitian, Karen Warman made her follow a 80/20 diet comprising 80% formula and 20% anti-inflammatory diet, also called "clean" diet.

While she was at home, Caroline used an online food journal called Cronometer. This daily diary allowed him to share food information with Warman who then reviewed the diary and determined if his dietary needs were being met. A few weeks after starting weaning, Caroline's DCI team reduced her formula milk intake to 50% and slowly increased her solid food intake.

"During my visits with Caroline, we discuss the foods she misses and we help find alternatives that fit a healthier profile," says Warman, one of two dietitians in the US. EIA still processing today Caroline.

Using his time and voice to increase awareness

Now, nothing is slowing down Caroline.

Since her diagnosis and her time at EEN, Caroline has led the IBD awareness campaign. Her friends – aka "The Warrior Squad" – accompanied her on a walk for IBD, and she traveled to Washington, DC, where she spoke in front of the Senate to raise awareness about IBD and EEN. This summer, she participated in Camp Oasis of the Crohn's and Colitis Foundation, a camp specifically designed for children who care for Crohn's disease and ulcerative colitis. A staff physician at Camp Oasis, Boston Gastroenterologist for Children Dr. Naamah Zitomersky was able to provide continuity of care by preparing Caroline's shakes throughout the summer.

<img class="wp-image-33521 size-full" src="" alt=" A girl at State House after receiving EEN for IBD "width =" 800 "height =" 532 "/> Caroline's trip to Washington, DC

Reflecting on her trip, Caroline's advice to others children: "Be creative with her, stay strong and use humor to get through the hard days," she says.

Learn more about Boston Children's Center for Inflammatory Bowel Disease and our approach to care



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