For Nathan’s Family, Seeking Specialized Care for EoE was “The Best Move We’ve Ever Made”
For even longer than he can remember, Nathan has faced more than his share of obstacles in the way of his health. As a baby, he was diagnosed with a liver condition known as biliary atresia that causes scarring and blockages in the bile ducts, resulting in loss of liver function. A life-saving liver transplant at Lurie Children’s at 10 months old was only the beginning of Nathan’s journey.
Throughout his childhood, Nathan, now nine years old, has stayed in close contact with his team at Lurie Children’s as they monitored his health. But managing his health has not been simple, and Jen says her son’s chart reads “like a medical book.” Because the liver is connected to the gastrointestinal tract, his body is vulnerable to conditions that affect his digestion.
In 2017, a scope revealed Nathan had a high count of white blood cells known as eosinophils in the surface lining of his esophagus. This is a characteristic finding of eosinophilic esophagitis (EoE), a chronic allergic disease of the esophagus.
Initially, Nathan only experienced episodic side effects, but within two years his symptoms had worsened until they began to completely interfere with his daily life. “I kept getting phone calls from the school nurse saying Nathan has thrown up, or that he had a headache and was lying down,” Jen said.
Nathan also suffered from a severe itching sensation, which can be a common side effect of a liver failure, but which confused his doctors as his liver was in good health. Only a steroid seemed to be able to prevent the itching, but the drug had negative side effects.
“It got way out of hand, until we were packing crackers and Gatorade for him to bring to school every day so he could cope,” Jen said. “That’s when we decided to tackle this in a different way.”
The family was aware that at Lurie Children’s, Dr. Joshua Wecshler, an attending physician in the Gastroenterology, Hepatology and Nutrition Program, specialized in the treatment of EoE in kids as the Research Scholar for the CURED (Campaign Urging Research for Eosinophilic Disease) Foundation.
“We knew he was the guy to go to,” Jen said.
Seeing Results with Expert Care
When Nathan’s family made their first appointment with Dr. Wechsler, “it was the best move we’ve ever made,” Jen said.
Working closely with Nathan’s transplant team, Dr. Wechsler took a holistic approach to Nathan’s treatment to protect his liver health. He also partnered with the dermatology team to ensure he could develop a treatment plan that would successfully prevent the itching that had deteriorated Nathan’s quality of life.
“Dr. Wechsler dove in, running labs every two weeks on Nathan to look at eosinophils in the blood, which were always high,” Jen said.
Focusing on eliminating one symptom at a time, Dr. Wechsler developed a treatment plan to address the vomiting, chronic stomach pain, headaches and lethargy that Nathan has experienced.
Dr. Wechsler suggested Nathan try an elemental diet to avoid giving him more pharmaceuticals. Within four months, the diet helped to reduce Nathan’s eosinophils from 100 to 17, and eliminate his symptoms of stomach pains, vomiting, headaches and fatigue.
After speaking with Dr. Amy Paller, Nathan’s dermatologist, the team decided to prescribe Nathan a medication for rheumatoid arthritis, which they found successfully blocked the itch receptors. Within four days, the itching stopped completely.
According to Jen, the team approach to care has been a “god-send,” who added, “When you have all of your specialists under one roof, it’s so much less stressful for the parent. To have teamwork and collaboration among the three serves the patient and the family so much better. They’re our superhero team.”
Unwavering Commitment to Excellent, Holistic Care
Nearly a year into his treatment plan with Dr. Wechsler, Nathan and his family are encouraged by the major strides in Nathan’s overall wellbeing and remain committed to continuing to learn the ins and outs of EoE as they go.
“When you sit down with Dr. Wechsler, it’s like sitting down and talking to your brother or your uncle. He’s really listening to you. He understands that when it starts to hit home life, that’s when it becomes a problem and that’s when you have to dig deep and find good solutions.”
Nathan’s family is grateful for Dr. Wechsler’s vast clinical knowledge as well as his devotion to providing thoughtful, customized solutions and ongoing education on the condition and the possibilities for treatment.
“He always takes his time with us,” Jen said. “I’ve never had a two-hour clinic appointment, but I do with Dr. Wechsler. He makes sure our questions are answered and gives us a full education. If there’s something we don’t understand, he will teach it to us and make sure we understand. He has been our saving grace.”
About Lurie Children’s Eosinophilic Gastrointestinal Diseases Program
The Eosinophilic Gastrointestinal Diseases (EGID) Program is devoted to the comprehensive care and research of children diagnosed with eosinophilic esophagitis (EoE), eosinophilic gastritis (EG), eosinophilic gastroenteritis (EGE), and eosinophilic colitis (EC). Located at our Outpatient Center in Lincoln Park, the program serves the growing number of children who suffer from EoE, EG, EGE, and EC. We have a dedicated, multidisciplinary team made up of specialists from many different areas. Combining several areas of expertise into every diagnosis ensures that our patients have the most thorough and best care possible.
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