Stanford Medicine Children’s Health provides the latest expert, research-driven care to children with bowel disease
Abigail (Abby) is a high-energy 8-year-old from Visalia, California, who loves to bake sweets, create art, dance around the living room, and do gymnastics in the yard. Yet, she wasn’t always this carefree. She lived with undiagnosed inflammatory bowel disease (IBD) for close to two years.
The first sign that something was wrong with Abby was her severe constipation when she was 4 years old. Her parents, Brittani and Aaron, sought help from a local children’s hospital, which performed a colonoscopy.
“It came back normal, but it wasn’t,” says Brittani.
Abby’s IBD continued to brew, with worsening inflammation in her gut. She developed a perianal fistula, a small tunnel that formed near her bottom, making it painful for her to sit. Her hometown doctors believed the fistula was an external abscess and treated it with surgery.
“She couldn’t sit on the carpet or plastic chairs in kindergarten, and she had to receive wound care from the nurse at school and from me at home. It was painful and she was embarrassed,” Brittani says.
Several months went by with the family treating the fistula as a wound, and as expected, it didn’t heal.
“I am a pediatric nurse practitioner, and I knew there was nothing else I could do to help it heal. I begged the doctors to do exploratory surgery, and that’s when they discovered it was a perianal fistula,” Brittani says.
Upon a closer look at Abby’s original colonoscopy, the underlying pathology showed signs of very early-onset IBD, particularly Crohn’s disease. Crohn’s disease causes redness, swelling, and sores along the digestive tract. It is a chronic (long-term) condition.
According to a National Institutes of Health study, pediatric IBD is rare. It occurs in 2 out of 1,000 children in Western countries. Its rarity adds to the risk of its being misdiagnosed.
Symptoms of Crohn’s disease can include abdominal pain, diarrhea, rectal bleeding, weight loss, fever, joint pain, and rashes. Abby’s constipation is not a classic symptom of Crohn’s, but it does occur.
Coming to Stanford Children’s for IBD care
Brittani and Aaron were desperate to find the right care for Abby. “Going down a road that we thought would bring relief and finding out we were going in the wrong direction was really disheartening and frustrating for us as parents,” says Aaron.
Brittani learned from a former colleague that Stanford Medicine Children’s Health had a robust IBD center. “That was a wonderful godsend,” she says.
The couple was excited to hear the news that an advanced center was nearby, but they were even more thrilled to learn that the director of the Center for IBD and Celiac Disease at Stanford Children’s, Michael J. Rosen, MD, was a national expert in treating IBD in children. More important, they learned that he cares for a large number of children with rare forms of IBD, including early-onset Crohn’s disease.
“We went from feeling very low to having hope again. We thought if anyone could help Abby, Stanford and Dr. Rosen could,” Aaron says.
The family made the three-hour drive to Stanford Children’s. Dr. Rosen created a comprehensive treatment plan for Abby, who was soon turning 6. It started with genetic testing to rule out a genetic cause for her Crohn’s disease, as well as tests to exclude an immune deficiency.
From there, Dr. Rosen recommended an infusion of a biologic medicine to bring down inflammation in Abby’s gut and to heal the fistula. By tailoring her medicine and getting it just right—something that isn’t a simple task—Dr. Rosen helped Abby begin to heal quickly.
“He moved fast with treatment, and in a short time we saw her inflammatory biomarkers improving and trending in the right direction, so our hopes were starting to be realized,” Aaron says. Within a few months, the fistula healed.
Dr. Rosen partnered with an infusion center near the family’s home in Visalia to make it easier for Abby to get infusions every four to seven weeks, something that will continue throughout her life to keep her Crohn’s under control. The family appreciates the convenience of meeting with Dr. Rosen via telehealth and how Stanford Children’s groups procedures in one appointment to save on stress for Abby.
Getting all their needs met in one place
The Pediatric Inflammatory Bowel Disease program at Stanford Children’s doesn’t just treat the disease, they treat the whole child. “We make sure Abby and her family are supported socially and emotionally so they have the tools they need to cope with her chronic illness and treatments,” Dr. Rosen says.
Abby’s holistic care included meeting with IBD Nutritional Therapies early on to find a diet that would work well with her medicines, as well as receiving support from an IBD-specialized social worker. He was able to help the family set up a 504 plan at Abby’s school, which established accommodations for her disease, including unfettered bathroom access and time off for medical care. The family was also invited to attend a parent support group through IBD Psychosocial Services.
“Since starting treatments, she has picked back up on her growth. Her height growth really slowed and had proportionally dropped during the years prior to her diagnosis. She is now growing well and looks healthy again,” Brittani says. “I feel really blessed that we have access to such a great academic health care system.”
Stanford Children’s specializes in treating rare and complicated IBD, like Abby’s, with outstanding outcomes. The center achieves 85% remission for its IBD patients.
“With the right medicine, Abby is having regular bowel habits that allow her to go to school and do activities. Her disease doesn’t interfere with her ability to live her life,” Dr. Rosen says. “Abby has done amazing so far, so I am very hopeful she will continue to maintain remission.”
Dr. Rosen will manage Abby’s care and tailor her treatments as she grows. As much as he dislikes the fact that children get Crohn’s, he values the chance to care for Abby.
“Abby is always so positive and excited to tell me about her life, like how she loves gymnastics. Her parents care for her deeply and prioritize her health,” he says. “Our relationship is an outstanding example of a genuine and trusting partnership between a family and a physician.”
Brittani and Aaron are proud of how strong and resilient Abby has been, and they’re extremely relieved to put their rough start behind them.
“We now have confidence and hope in her care journey,” Aaron concludes.
Learn more about the IBD Center at Stanford Medicine Children’s Health >
