Inflammatory Bowel Disease (IBD): Max's Story
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Max, 12, has a big personality. “A very independent kid and a big ham” is how his mother, Anna, describes him. “He’s also tough as nails.” All these character traits meant that when he was 10 and his symptoms started piling up, Max tried his best to ignore his discomfort.
First Max experienced terrible stomachaches and bouts of diarrhea, and then pain in his rectum. Max’s primary care doctors believed they were treating him for general constipation and hemorrhoids, and they suggested he give up milk, add fiber, and make other dietary tweaks. “He loves milk,” explains Anna, “but we cut it out, to give it a try.” Nevertheless, Max’s problems remained unresolved. “We just had no idea,” says Anna.
By end of summer 2017 he started to lose weight and tire easily. He had increasingly worse headaches and joint pain. The breaking point for his mother was when Max didn’t want to play with his friends two days in a row. “That’s when I knew I had to call a specialist,” remembers Anna.
A gastroenterologist near the family’s New Jersey home discovered that Max had inflammation in his small intestine and a fistula — an abnormal connection between an organ and another structure that develops when an organ becomes inflamed or injured. A fistula involving the small and/or large intestines is a common complication of Crohn’s disease. The gastroenterologist recommended an emergency colonoscopy and endoscopy, and a diagnosis of Crohn’s disease was confirmed.
Max began taking seven pills a day to attack the inflammation. “This worked for a little while,” says Anna, “but he became symptomatic again within three weeks.” New medication caused him to break out in hives all over his body. Max continued to lose weight.
In October, Max was approved for infusions of a synthetic antibody. Max’s options were to receive the infusions at home from a visiting nurse or at a nearby dialysis center. They initially opted for the home infusion, but the experience didn’t go smoothly, so they opted to be cared for by a team of pediatric IBD specialists.
Anna turned to their pediatrician, who worked diligently and connected the family with the Center for Pediatric Inflammatory Bowel Disease at Children’s Hospital of Philadelphia (CHOP). “When we arrived at CHOP, we immediately felt relaxed,” says Anna. “Max loved the technology, and the infusion area was comfortable and happy. He loved the nurses, and I was happy to have such an amazing team that worked together.” There was another upside to the CHOP visits, notes Anna: “He also loves the ginger ale and cracker combo that they give him. He looks forward to every eight weeks now!”
The infusions have been a game-changer for Max, and he’s able to fully enjoy his favorite things: rapping, science experiments, baseball and video games that rely on strategy. He might want to be a doctor when he grows up, “But all the kids say that,” explains Max, so instead he claims he wants to be a real estate agent.
Max has not had a flare-up in more than year. He can eat without the fear of unpredictable bellyaches or diarrhea.
“He loves to be active and laugh — he’s thriving so much!”