Feeding Felix: overcoming an early onset of Crohn’s disease

Felix

At just 3-months-old, Felix’s stool was regularly showing traces of blood. Alarmed, his mother Jessica Hsu quickly brought her young son to see his pediatrician, who referred Felix to be seen by Boston Children’s Hospital pediatric gastroenterologist Athos Bousvaros, MD, MPH.

Gastrointestinal bleeding in infants is a fairly common problem, often the result of a change in diet or possibly a food allergy. Because Felix was still in the nursing stage, Bousvaros had Jessica remove some potential allergy triggers from her diet to keep traces of them from eventually ending up in her breast milk, and in turn, in Felix. She spent the next few months avoiding dairy, wheat and soy, but Felix’s condition continued.

At 6-months-old, Felix began eating solid foods in addition to nursing, but the blood in his stool remained. To help, Bousvaros placed the young boy on a probiotic, anti-inflammatory medicine, but nothing reduced his symptoms. As time passed, he began refusing solid food—likely due to the fact that digestion was clearly hard on his system—and within a few months he was getting all his nutrition through nursing. The reduced diet took its toll; by the time he was 9-months-old, Felix had almost completely stopped growing and gaining weight.

Felix’s NG tube

Given his patient’s condition, Bousvaros fitted Felix with a nasogastric (NG) tube, which runs from the nose to stomach to feed him a formula providing much needed additional nutrition. Within weeks, Felix had put on several pounds and appeared more alert; however, the blood in his stool remained.

With all other options exhausted, Bousvaros gave the child who was barely 1-year-old an endoscopy, which came back with startling results—Felix had Crohn’s disease.

“Crohn’s typically is diagnosed when a person is in their teens or twenties,” Bousvaros says. “It’s very rare for a child so young to present with the condition, so Felix’s test results were was a shock.”

Regardless of how unexpected the diagnosis was the early identification of his Crohn’s meant Felix could begin treatment right away. First, he was fitted with a G-tube, a more long-term tube feeding option than the NG tube, which would deliver medication and a hypoallergenic formula that would provide all the nutrients he needed, without triggering a flare up of his Crohn’s.

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Initial medical treatments involved a special type of steroid and Remicade, an antibody that worked well at first, but it needed to be abandoned when Felix eventually developed a reaction to the medication. Bousvaros went back to the proverbial drawing board and began working with several different medications and doses, until he finally prescribed Humira, a monoclonal antibody that put his Crohn’s in full remission.

Still, despite being relieved of his symptoms, Felix’s treatment was far from over. By 3-years-old, the young boy had not overcome his oral aversion, still refusing to allow anything but breast milk to touch his mouth. It took time and effort, but he gradually began to eat again—slowly and in smaller doses than most children his age. To keep him growing at a typical rate, Felix’s mother continued to supplement his diet with all additional nutrients via G-tube.

Now, at 4 years, Felix is eating more than ever, though Jessica still has to provide formula for him at night via the G-tube, a process she and his doctors hopes will lessen over time.

“I look forward to the day when he doesn’t need his G-tube at all,” she says. “Until then, I’m very thankful he has the option to use his hypoallergenic formula. I’m not sure that would be so easy as it is if not for Dr. Bousvaros and his team.”

Securing Felix’s specialized formula and Crohn’s medication was difficult at first and required help from the staff at Boston Children’s Inflammatory Bowel Disease (IBD) Center. Early in his diagnosis, the family’s insurance provider scoffed at the idea of paying for his Humira as a treatment for Crohn’s, as recorded cases of the disease in a child so young were extremely rare. It was stressful for Jessica at the time, but the staff at the IBD Center worked with her and the provider until all Felix’s needs were met.

“Because the team was so attentive, my husband and I never had to worry about whether or not Felix would be able to receive his medication,” she says. “It freed our minds and allowed us to focus on what really mattered, which was caring for our son.”

These days Felix is feeling much better

Such dedication to Felix’s health extended beyond insurance negotiations—it crossed thousands of miles and international borders. Two years ago, Felix and his family moved to Geneva, Switzerland, for several months to accommodate the work of Felix’s father. When Jessica told Bousvaros of the upcoming move, he contacted a gastroenterologist colleague whom he knew practiced in the area. Though the clinician was not taking on new patients at the time, he agreed to see Felix, and with Bousvaros’s help, the young boy and his family received a seamless continuation of care the entire time he was overseas.

And while coordinating international care was a unique situation, Jessica says the lengths to which Bousvaros went for Felix and her family is typical of the team, who resumed Felix’s care the moment they returned to America.

“Every aspect of the care we received at Boston Children’s has been so thoughtful, from diagnosis to treatment, to follow-up visits,” says Jessica. “Dr. Bousvaros and his group have taken care of everything, while still making us a part of all the decisions related to Felix’s treatment. It’s a great team effort, and it’s clear that everyone is on the same page. We feel very lucky to have them.”

Learn more about how Boston Children’s treats children like Felix with Crohn’s disease or ulcerative colitis.