Smart, funny, kind and talented Sarah Seaman is “super creative and can do anything she puts her mind to,” according to her mom, Alician. These days, she’s focusing her attention on enjoying her senior year of high school – but several years ago she was in the throes of the worst days of her life.
In 2015, Sarah had gotten to the point that she couldn’t eat any solid foods. All her nutrition was coming from liquids and she was in intense pain. After nearly a year and a half of searching for answers, her pediatrician referred her to CHoR.
“Sarah was so sick by the time we actually got to CHoR. We were at a total loss as to what to do to help her,” said Alician.
“When first seen in clinic, Sarah was experiencing symptoms of eosinophilic esophagitis (EoE) which typically include gastroesophageal reflux, abdominal pain, vomiting and trouble swallowing food,” said Dr. Narendra Vadlamudi, her gastroenterologist.
Sarah has an aggressive form of EoE, which was causing narrowing in her food pipe (esophagus) from active inflammation. In people with this condition, when certain foods touch the esophagus, the contact triggers an allergic reaction leading to recruitment of allergy cells (eosinophils) in the lining of the esophagus. The allergy cells induce a local inflammatory reaction causing swelling. If the trigger food isn’t removed from the diet, the inflammation can become scar tissue in the deeper layers of the esophagus. Accumulation of the scar tissue over time leads to narrowing (stricture) of the esophagus, choking and gagging while eating, difficulty swallowing and sometimes food impaction in the esophagus.
“When Sarah came to us, she was noted to have a long segment stricture in the esophagus which required multiple dilations using a flexible scope, or endoscope,” added Dr. Vadlamudi.
The dilations to open the esophagus and a strictly restricted diet helped with Sarah’s symptoms, but they weren’t a long-term solution. With concerns of several food triggers and increasing difficulty in maintaining a multi-food restricted diet, Dr. Vadlamudi recommended medications to control Sarah’s symptoms and inflammation. She was initially started on topical steroids and acid blockers. Although she had a good response, she continued to show active inflammation in the esophagus. Still not satisfied, Dr. Vadlamudi continued his quest to help Sarah feel better.
“Recently, the FDA approved a medication called Dupixent which blocks specific proteins that trigger inflammation. Eventually, the swelling goes down and patients start feeling it easier to swallow,” said Dr. Vadlamudi. “We started Sarah on this medication about a year ago. She’s since had two endoscopies which showed no active inflammation or stricture and she is now eating regular food with no active symptoms.”
“CHoR has been a saving grace for us. Dr. Vadlamudi has been the biggest blessing to our family. His nurse Robin has been with us the entire time and we can't forget the amazing scheduler, Margaret,” added Alician. “They have been there from the absolute worst times to now when we are seasoned pros. I can't say enough good things about them all.”
Although long-term data on Dupixent isn’t available yet, evidence suggests it can provide ongoing symptom and disease control in people with EoE. CHoR is being considered as a regional recruitment center for long-term studies to keep an eye on this. In Sarah’s case, she continues to show an excellent response to Dupixent and she’s now able to divert focus from food complications and clinic visits, to doing well in school and extracurricular activities. She plans to go to ultrasound tech school after graduating from high school in May.
“I am so proud of Sarah for all she's been through and how she handled her illness. She was on a lot of food restrictions and was left out of so many activities that ‘normal kids’ could do because she couldn't eat like everyone else,” added Alician. “She always did what she needed to and never complained. She's been through so many endoscopies and throat dilations she can almost tell Dr. V how to do them. We absolutely can't ever begin to thank CHoR enough for getting our daughter healthy again.”
While Sarah was getting better, she was paving the way to help others too – something she will continue do in her career as an ultrasound technician.
“It is in fact children like Sarah who help us understand this disease process well and serve other patients who are just beginning their EoE journeys. So, thank you to Sarah and her family,” said Dr. Vadlamudi.
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