Dawn McCoy vividly remembers crying on the shoulder of the nurse during her son’s first meeting with CHoR gastroenterologist Dr. Martin Graham. She was overwhelmed with frustration, having just learned that much of what Joshua had been eating was causing his medical issues to worsen.
At the time, 18-month-old Joshua was “in crisis.” He was unable to keep food down and was very small for his age. His skin was inflamed with hives and eczema – “literally falling off,” Dawn says – and he constantly scratched his head and body with such force that he’d developed bald patches on his head. Dawn had taken Joshua to a number of skin and allergy specialists, but had not seen significant improvement. Wondering if his problems could be food related, she had contacted Dr. Graham for help.
Dawn’s instincts to take the search a step further were correct. With a blood test and an endoscopy and biopsy of Joshua’s esophagus, Dr. Graham confirmed that Joshua had a condition known as eosinophilic esophagitis, or EoE. In individuals with EoE, the wall of the esophagus (the tube that propels swallowed food from the mouth to the stomach) becomes inflamed with large numbers of eosinophils (the white blood cells associated with allergic reactions). These active cells then cause thickening of the wall of the esophagus leading to symptoms such as difficulty swallowing and vomiting. The exact allergen that causes EoE is not known, but can to be related to specific foods or environmental allergens.
Dr. Graham immediately referred Joshua to CHoR allergy specialist Dr. Anne-Marie Irani who determined that he was allergic to the “top eight” food allergens (milk, eggs, peanuts, tree nuts, fish, shellfish, soybeans and wheat) and to non-food allergens like pollen. EoE can be treated by either an elimination diet, or by swallowed corticosteroid medication, and Joshua’s medical team suggested he begin both to reduce inflammation. They provided hands-on training to Dawn in how to prepare meals that Joshua could ingest without vomiting, but there was a complicating factor that also needed to be addressed: Joshua was reluctant to eat as he’d experienced so much pain when swallowing due to his inflamed esophagus. He was hospitalized for related weight issues (failure to thrive), and rather than proceeding with a feeding tube, Drs. Graham and Irani worked together to coordinate treatment to stabilize him then referred him to CHoR’s Children’s Feeding Program for specialized help.
At the same time he needed foods eliminated from his diet, Joshua also needed help to “learn to eat to live and survive,” Dawn explains. In the weeks that followed, Joshua worked with the Feeding Program’s interdisciplinary team during twice weekly feeding therapy sessions, and made significant progress overcoming his inability to swallow. “When we started he refused to eat meals and could not tolerate much beyond finely pureed foods,” Dawn recalls. “Thankfully, he is now starting to eat small slices of ham and rice crackers in addition to meals that are pureed. We are amazed at the strides he’s made.”
Since their first visit to Dr. Graham in 2012, Dawn and her family have also worked with several medical and nutritional specialists to figure out how to adjust their lifestyle to accommodate Joshua’s needs. He has a limited diet of “safe foods” because most foods make him sick. Much of his food is still pureed and Dawn uses separate blenders and cooking utensils to avoid cross contamination. Dawn is vigilant in monitoring his food and environment. Joshua’s parents pass a notebook back and forth daily that helps them keep track of any flare-ups or concerns and when they are out and about, they are always prepared: “His meals, snacks and nutritional supplements are packed in a cooler since his pureed meals and snacks are not readily available at the local grocery store,” Dawn explains. “I keep an emergency backpack handy with a portable nebulizer, face mask and EpiPen for environmental factors that cannot be controlled. Round-the-clock nebulizer treatments can be the norm during high pollen season. My GPS is also programmed to identify the closest ER for an unexpected visit for a medical emergency.”
Many of Joshua’s organs have been affected by his allergy issues and Dawn says it has been especially helpful to them to have teams from multiple departments – gastroenterology, allergy, immunology, feeding, nephrology and other specialty areas – working together to support chronic and diverse needs: “With chronic ailments, it’s important for medication and treatment to be a collaborative effort.” To ensure collaborative care from the start for children with EoE, CHoR started a team-based Eosinophilic Esophagitis Clinic in 2013. “In our multidisciplinary clinic, a pediatric gastroenterologist, pediatric allergist and registered dietitian work together and offer comprehensive evaluation and care,” Dr. Naren Vadlamudi, the clinic’s gastroenterologist, explains. “Having collaborative care in a single clinic saves multiple trips to the respective specialist clinics and gives a unique opportunity for families to discuss the disease at length and get all their questions answered.”
Dawn is excited to see this team together as she knows how beneficial it will be for families in situations similar to hers. She’s also doing her part to help. After learning about an EoE family support group in Northern Virginia, she started one in Richmond; they now have 75 members. Dawn also spoke alongside members of CHoR’s EoE clinic team at an event held during Virginia’s governor-declared EoE Awareness Week (May 18-24) to help build awareness among educators, care providers and school nurses about this condition. According to Dr. Vadlamudi, even the medical community did not know much about EoE until the late 90’s and only really started looking for it in the early 2000s. “The frequency has since been increasing significantly, partly due to increased awareness among health care providers,” he says. “Now about one in 2000 children and adults are affected by EoE in the United States, but the real incidence of the disease is still unknown.”
With the awareness of what is needed to successfully manage Joshua’s EoE issues, Dawn is now looking toward the future in what she calls the “proactive phase.” This phase focuses on safe planning for new experiences – like playdates at friends’ houses or finding a time for a family trip to Busch Gardens when pollen counts are low. They are also helping Joshua learn to manage his own issues. “Already at age 4 he knows there are things he can’t touch,” Dawn says. “Our goal is giving him support without having him live in fear.”
One of the things Joshua loves most in life is music, especially songs from Broadway musicals. He’s learning to play the piano and drums and sings every day with his grandmother, Andrea. His current favorite song, Tomorrow from the Annie soundtrack, matches well with his personality, which Dawn describes as “playful” and “courageous,” both helpful traits with what he’s faced. And for Joshua, daily life has become much more playful as he has come such a long way since his first visit to Dr. Graham three years ago when he was refusing to eat, experiencing severe skin issues and scratching his head. With many positive changes and much coordinated support, thankfully “life’s not like that anymore for Joshua,” Dawn says.