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Further complicating matters are the risks of the biologics for some patients. Cyclosporine has the potential for kidney and liver damage; methotrexate shouldn’t be used during pregnancy; natalizumab is associated with a rare brain infection. Yet these drugs are sometimes the only options for Crohn’s patients to regain their quality of life.
“Right now, at the time of diagnosis, we don’t have a reliable way of predicting who is going to become complicated and who isn’t,” said Dr. Jeffrey Hyams, director of pediatric gastroenterology at Connecticut Children’s Medical Hospital in Hartford and a participating physician in the RISK project. The study, he said, should provide such information and “allow us to better predict how people will react to the medications that we have; specifically, the newer medications.”
Kate Goldbaum, 19, a sophomore at UNC-Chapel Hill who was diagnosed with Crohn’s in eighth grade, tried a slew of therapies before consenting to be treated with a biologic, Remicade.
“It’s scary to commit to getting an infusion every seven weeks for the rest of your life when you are 14 years old,” said Kate, “and I prolonged treatments that weren’t helpful for longer, because I didn’t want to commit to it.” But as a high-school senior, she relented, and for the first time in three years, she remembered what it felt like to not be in pain. “I would never change my decision. I don’t have any symptoms anymore; there are so many things that I suddenly have the energy to do.”
Since starting the Remicade, Kate has developed mysterious rashes, had her hair fall out and was diagnosed with mononucleosis. It’s not known if there is a connection between these ailments and her infusions. “Things happen, and you don’t know why they happen or why they get resolved,” said Kate. “But that is part of living with a chronic disease. It is never as black and white as you want it to be.”
According to Kim, cases of young children suffering from intestinal inflammation have been growing “across the board. We are seeing kids who are younger and more difficult to treat, because they are sicker and have more complications, and so doctors are moving more quickly to prescribe the biologics,” Kim said. “I wonder about the impact of being on such aggressive treatment so early on in life, when your body is still in development. And what happens when they are young adults, or if the medications stop working?” Kim has diagnosed patients as young as 12 months old and has placed children on biologics as young as three years old. Most recently, a two-year-old patient’s family opted for intestinal surgery.
“When you sit there in an office, with a child, and the family is weeping, it is beyond unbearable. My hope with RISK is to be able to minimize the pain these kids have to go through, both physically and emotionally,” she said.
Wohl, who was hesitant to put Zac on a risky medication at such a young age, opted for a special diet given through a feeding tube, which calms the troubled intestines and reduces inflammation. The feeding tube, applied through Zac’s nostril, brought him into remission within eight weeks. Though it is no longer in consistent use, his family plans to continue it at night, in the privacy of their home, until they can find a more suitable treatment. “There are things that you can do with an 8-year-old that you can’t with a 15-year-old,” said Wohl. “This works great for right now, but we have to be prepared as he grows up that walking around with a feeding tube may not be an option. We are hoping that there will be a cure by then.”
The AIDS specialist sees parallels between the HIV epidemic of the 1980s and Crohn’s disease and says Jews should claim ownership of the disease that affects them so disproportionately. Said Wohl, “I really feel strongly that we need the kind of advocacy that HIV had, to rally together behind this and figure out a cure.”
Contact Hannah Rubin at email@example.com