Thomas has also been dealing with inflammatory bowel disease (IBD) since he was 4.
It started with bloody diarrhea. Thomas’ parents, Heather and Todd, took him to his pediatrician, who was not concerned at first. But when it went on for three weeks, he sent them to a gastroenterology (GI) specialist in New York near the family’s home in northern New Jersey.
That doctor did a colonoscopy and endoscopy and took tissue samples for examination. The results surprised him. Thomas had exceptionally high eosinophil counts in both his colon and esophagus. Eosinophils are a type of white blood cell, and high counts are an indication of infection, allergy or inflammation.
The inflammation in the colon looked like IBD, and the high eosinophil counts in the esophagus suggested eosinophilic esophagitis (EoE), a chronic allergic reaction in the esophagus. It was rare to see that combination, and even rarer to find it in a child so young. He recommended that they bring Thomas to a specialist at Children’s Hospital of Philadelphia (CHOP).
Getting inflammation under control
For their initial appointment at CHOP, the family met with a doctor in the Division of Gastroenterology, Hepatology and Nutrition (GI). He looked at the tissue sample slides from the scopes in New York and confirmed the diagnosis of IBD and EoE. He also examined Thomas and determined that he was very anemic. He prescribed balsalazide for the IBD, one of the milder medication options. The doctor also connected the family to nutrition specialists at CHOP for the EoE, who started Thomas on foods high in iron and on an elimination diet to identify foods that triggered the inflammation in his esophagus.
About the VEO IBD Program
Judith R. Kelsen, MD, took Thomas on as her patient after that first visit to CHOP. Dr. Kelsen is Director of the Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Program. Infants and children who have IBD from a very young age often have different symptoms than older children and adults with IBD. These patients typically don’t respond to more traditional IBD treatments and require more specialized evaluation and targeted treatments. Thomas’ combination of conditions made him a good fit for the program.
Thomas responded well to both treatments. He took the balsalazide twice a day dissolved into orange juice, which masked the medicine’s bright yellow color. And the elimination diet quickly flagged dairy as a key driver of the EoE inflammation. The menu at home changed to eliminate processed foods, which was more work in the kitchen, but that had a positive side effect in healthier nutrition for the whole family. The combination of medicine and dairy-free diet brought his eosinophil counts down to normal levels.
Thomas needed two iron infusions over the next couple of months to correct his anemia, but that was the only treatment he required to supplement the special diet and the doses of balsalazide. He had no more IBD symptoms for the next two years.
Heather and Todd had researched IBD, and considered themselves lucky that Thomas’ case seemed to be a mild one, kept under control with diet and one of the lower-level medications.
A change in course
But in May 2016, when Thomas was 6, the symptoms of IBD returned. He needed to go to the toilet 20 to 30 times a day, and was up several times every night. He was out of school for the entire month of June.
Dr. Kelsen had him come in for another colonoscopy and endoscopy to figure out what was wrong. “After the procedures, the whole team came in to tell us what they had found,” Heather says. “So we knew it was serious.”
Dr. Kelsen explained that the disease had progressed further. Thomas’ colon had significant inflammation and he needed more aggressive treatment to stop the advance of the disease. She recommended Remicade®, a biologic medicine that had been approved for treating inflammatory diseases, including Crohn’s.
“Dr. Kelsen could see how hard this was for us to process,” says Heather. “But she knew how to talk to us to explain how serious Thomas’ condition was, and she knew to give us time. She took the time to answer all our questions.”
Thomas had his first Remicade infusion the following week, and continued to get them every two weeks for several months. He didn’t respond immediately. He spent the summer at home, where he could get to the bathroom every 15 or 20 minutes. After several changes to his treatment plan, four months after the Remicade treatments began, he started to improve.
By the fall he was doing much better. He used the toilet in the morning and when he got home from school, but didn’t need to go during the school day on most days. The Remicade infusions are down to every four weeks and will soon go to every five weeks.
Dr. Kelsen had explained from the start that they needed to treat both the IBD and EoE. While the dairy-free diet had helped the EoE at first, it had not been enough. The EoE had gradually grown worse.
Modified diet is the most effective treatment for EoE, and the same changes can help with IBD. So the family became even more careful in their eating. They don’t eat out, and no packaged foods make it into the house. Even commercially baked bread is off limits, as it is made with preservatives.
With some key nutrient sources off limits, Heather is careful to make sure Thomas gets enough fat, protein, vitamins and minerals by choosing the menu carefully. Luckily, Thomas’ tastes have adjusted to his body’s needs.
To keep him from feeling left out at events at school or with friends that involve foods that could hurt him, Heather finds out in advance what will be served, and makes an alternative portion for Thomas from healthy ingredients. Pizza day is a regular event at school, and Thomas always has his own cheese-free slice so he can be part of the fun. In the same way, Thomas gets a slice of birthday cake at a party that looks a lot like what the other kids are eating, but is made with ingredients that won’t hurt him.
“CHOP has been wonderful for us. It's a two-hour drive but it's worth it. We go to CHOP because we trust them and we trust Dr. Kelsen. She's Thomas' doctor but she's also ours. She takes the time to answer our questions, and she also knows when to be firm with us.”