It was a big day when Caleigh gave up her sippy cup, but not for reasons you’d think. Caleigh has eosinophilic esophagitis (EoE), a rare allergic inflammatory reaction of the esophagus. For 10 years, she received nourishment primarily from an amino acid formula, which she drank from a sippy cup to mask the smell.
Then, at age 12 and with the OK from her team at the Center for Pediatric Eosinophilic Disorders and a new treatment option at Children’s Hospital of Philadelphia (CHOP), Caleigh tasted milk. She suffered no allergic reaction.
“It was a big relief when she presented with no symptoms after trying milk, because dairy would open up a lot of foods such as cheese, milk and yogurt,” says Caleigh’s father, Jim.
Early signs of trouble
Caleigh was born in 2002, and from the beginning, breastfeeding was difficult, her mother, Colleen remembers. Caleigh would projectile vomit after each feeding, so Colleen would start over again, just to have the cycle repeat itself. Some days it seemed she was nursing around the clock, she says.
Their pediatrician assured them that Caleigh would grow out of it, but Colleen and Jim became alarmed when at 18 months, their daughter lost weight. Their pediatrician prescribed medication for reflux, but there was no improvement. The family found a new pediatrician, who recommended they bring Caleigh to CHOP.
They made an appointment and traveled from their home in Delaware to see Edisio J. Semeao, MD, a pediatric gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition at CHOP’s Main Campus in Philadelphia.
Dr. Semeao ordered a biopsy of Caleigh’s esophageal tissue. It tested positive for eosinophils, a type of white blood cell. The doctor explained to Caleigh's family that when eosinophils show up in the esophagus, where they are not normally found, they are often from "hidden food allergies." For Caleigh, EoE caused vomiting and stomach aches.
More About EoE
“It was scary as a parent because we had never heard of this before; nobody we knew had ever heard about this before, and what was online was so vague and unknown that there was no information available to us,” says Colleen. Caleigh was referred to see Terri F. Brown-Whitehorn, MD, an attending physician with the Center for Pediatric Eosinophilic Disorders and the Food Allergy Center. The family felt they were in good hands. CHOP is one of only a few pediatric hospitals in the nation with a specialized program for the disorder.
Testing revealed Caleigh was allergic to most foods. Under the care of Dr. Brown-Whitehorn Chris A. Liacouras, MD, Co-director of the Center for Pediatric Eosinophilic Disorders, and Michele Shuker, MS, RD, CSP, LDN, clinical program manager and dietitian, Caleigh stopped eating all food and instead, was put on a strict elemental diet of amino acid formula.
One new food at a time
An endoscopy of Caleigh’s esophagus after several months on the formula showed a decrease in eosinophils. It was time to slowly reintroduce food into Caleigh’s diet, one item at a time to see which she could safely eat.
Caleigh would try a new food, then follow up with an endoscopy two or three months later. If the results were good, Caleigh could continue eating the new food.
Some foods, like chicken and apples, caused immediate symptoms and her parents removed them from their daughter’s diet right away. Caleigh seemed to tolerate other foods, but her endoscopy results would show otherwise and she would have to give them up.
After 10 years of trialing different foods, Caleigh was able to eat some fruits and vegetables, but received most of her nutrients from the formula.
Colleen and Jim found ways to compensate. At restaurants, they would order Caleigh a bowl of ice to munch on while the family dined. Her birthday “cake” each year was a red plastic cup threaded with Dum-Dum lollipops, a treat she could tolerate. When Caleigh was old enough for school, her classroom was outfitted with a mini-fridge for her amino acid formula. Colleen’s only regret about how her family handled Caleigh’s EoE is the sippy cup. Caleigh relied on the spout to regulate the flow of the formula and to hide its smell. She wouldn’t drink the formula from anything else. But as she grew older, the sippy cup became embarrassing for Caleigh.
Advocating for Caleigh and others with EoE
From the time of Caleigh’s diagnosis, Colleen was determined to do what she could to advance knowledge and awareness of EoE. She became a co-moderator of an EoE support group that Dr. Brown-Whitehorn established in the tri-state area. In 2005, Colleen organized a group to run the Philadelphia Marathon, raising $70,000 for CHOP. The next year, she used Caleigh’s nickname "K.K." to create K.K.’s 5K Run/Walk for Eosinophilic Esophagitis in their hometown of Newark, DE. It has become an annual fundraiser for CHOP. Colleen says:
“It’s important to us to raise money for CHOP in hopes that they can do more research and maybe find a cure and better means for children to live with EoE.”
The big breakthrough
Despite her limited diet, Caleigh grew into a kid with “grit and perseverance,” who excels at school and swims competitively, her mother says. The family was hopeful when Dr. Brown-Whitehorn and Dr. Liacouras had Caleigh try new medication and gave her the OK to trial dairy the summer before she started eighth grade. They were elated when the endoscopy results showed the eosinophils remained low. For the first time in a decade, Caleigh could get her nutrients from everyday food. Finally, the formula — and the sippy cup — could be retired.
The following summer Caleigh added red meat to her diet, which opened a new world of steak and hamburgers (without the bun). Caleigh, now 17, still has IgE-mediated food allergies — she can’t touch or eat eggs or peanuts — but she doesn’t let that stop her from enjoying life.
She loves to bake, and each Christmas season, she spends a few days at her grandmother’s house, wearing protective gloves to make cookies. She and her family know there’s no guarantee that she will continue to tolerate dairy and red meat. But for now, they’re enjoying Caleigh’s freedom to eat those foods.
“The last four years have been very blissful in our house,” Colleen says.