An IBD Journey to Remission: Leo’s Journey Back to Childhood

Child with very early onset IBD achieves remission with the help of Stanford Medicine Children’s Health IBD experts

Five years ago, Hayes and Jenica Reed faced an unexpected challenge when their 5-year-old son, Leo, developed severe gastrointestinal issues such as diarrhea, abdominal pain, and blood in his stools, as well as fever, lethargy, and eye, muscle, and joint symptoms. Multiple emergency room visits, hospitalizations, and appointments with specialists led to a diagnosis that felt bewildering: very early onset inflammatory bowel disease (IBD). While the condition was unfamiliar to the Reeds, they quickly learned its rarity in children under 6 and the complexity it entails.

Approximately 6%–15% of all children diagnosed with IBD can get the disease before they turn 6 years old. And when IBD is diagnosed before age of 6, as in Leo’s case, it’s called very early onset IBD (VEO-IBD).

To alleviate his gastrointestinal (GI) symptoms, Leo’s community GI doctor prescribed steroids and mesalamine (a type of anti-inflammatory drug and a common treatment for IBD). Unfortunately, Leo experienced a rare reaction to the medication and required hospitalization—he presented with a stiff neck and fever, which is a side effect that can be mistaken for other serious conditions. His care team decided to stop his IBD medicine, and his gastrointestinal symptoms flared up quickly. At that point, Leo was prescribed biologicals. This led the Reeds to seek a second opinion at Stanford Medicine Children’s Health’s Center for IBD and Celiac Disease, where they met Alka Goyal, MD, a pediatric gastroenterologist and the associate chief of clinical affairs, in March 2021.

Turning point: Meeting Dr. Goyal and the Stanford Medicine Children’s Health team

Upon Leo’s assessment, Dr. Goyal recognized the unique challenges presented by his very early onset IBD. Children diagnosed at such a young age often face a more aggressive course of colitis (inflammation of the large intestine lining)—which is harder to treat—and require careful management to balance their developing immune systems with the necessary medical therapies.

Previously, in his hometown near Sacramento, California, Leo underwent an endoscopy, which did not have remarkable findings, and a colonoscopy, which showed extensive colitis. Further tests ordered by Dr. Goyal at Lucile Packard Children’s Hospital Stanford included stool studies that sought to rule out infections such as Clostridioides difficile (C. diff), among other things, which could have made his gastrointestinal symptoms and inflammation worse. At that time, Leo was taking a small dose of sulfasalazine (another anti-inflammatory drug), prescribed by Dr. Goyal, to help improve his symptoms without immune suppression (which biologicals and steroids are known to cause). While he was on a small dose of sulfasalazine and without taking steroids, Leo’s symptoms were flaring.

Dr. Goyal introduced vancomycin as a bridging treatment, while gradually increasing sulfasalazine, to bring Leo some relief. In some cases, a short-term course of antibiotics can independently be beneficial to control the colitis, in addition to anti-inflammatory drugs, which are commonly prescribed for patients like Leo.

After Leo achieved clinical remission, vancomycin was stopped. A few months later, his course of treatment was complicated by C. diff infections in his stools, requiring vancomycin therapy again.

Thirty to 40 percent of patients with IBD can sometimes get C. diff over their lifetime, and the presence of the C. diff infection usually signifies a more aggressive course of colitis compared with that in patients who don’t have it. Leo was diagnosed with recurrent C. diff that was successfully treated at a later time with a fecal microbiota transplant—an effective treatment that was made available commercially by the Food and Drug Administration (FDA) at a few centers in the country, under enforcement discretion (allowing it to bypass the lengthy FDA approval process).

This holistic approach, incorporating antibiotics, tested therapies for IBD (i.e., sulfasalazine), and a then-novel procedure for recurrent C. diff (fecal transplant), set the stage for Leo’s journey toward remission, but they were not enough to keep him in remission.

New horizons: Integrating an herbal solution and achieving remission

In the quest for optimal short-term and enduring treatments for Leo’s IBD, Dr. Goyal thoughtfully integrated the Reeds’ wishes as parents and their preference for alternative solutions. Employing extensive research and insightful discussions, Dr. Goyal introduced a promising herbal treatment she had discovered in the medical literature. The evidence for the new IBD treatment was positive in improving the management of colitis in patients like Leo.

“Leo responded exceptionally well to this new treatment, thanks to the multidisciplinary, patient- and family-centric approach,” Dr. Goyal affirms. “Our goal was not only to manage his IBD symptoms effectively, but to sustain his long-term health with the least-invasive intervention possible while taking into consideration the parents’ priorities.”

The Reeds, who have professional backgrounds in research and consuming data, actively researched Leo’s possible treatment options and the latest IBD research from the start of his diagnosis. Grateful for the dedicated care Leo received at Stanford Children’s, they’ve expressed their gratitude: “Having Dr. Goyal as Leo’s doctor to explore with us the best treatment options for Leo and understanding the credibility of this natural treatment was critical in this process of finding the best solution for our son.”

The success of Leo’s treatment approach was demonstrated by his ability to gain weight, and to have normal blood test results and normal levels of fecal calprotectin (a protein that is measured in the stool of IBD patients). If the colon is not inflamed, the value of fecal calprotectin is expected to be under 50 (with a goal of staying under 150 for IBD patients). In Leo’s case, his calprotectin was 1,620 before his care was transferred to Lucile Packard Children’s Hospital Stanford; after approximately three years of care under Dr. Goyal, it has maintained normal levels (11 in December 2024 and 21 in May 2025). Additionally, his colonoscopy in May 2025 demonstrated complete healing.

Family-centric care: The multidisciplinary approach at Stanford Children’s

The remarkable response of Leo’s body to the personalized treatment approach to IBD, which included novel and standard therapies, has led to his deep remission. His colonoscopy, endoscopy, and biopsies performed in May 2025 confirmed this positive outcome. “The care that was provided to Leo underscores our IBD and Celiac Disease Center’s willingness to engage in personalized medicine, through the use of a multimodal approach to therapies and diagnostic techniques,” says Dr. Goyal.

The integrated efforts of the multidisciplinary Stanford Children’s IBD team, which includes dietitians, nurse specialists, a psychologist, and a social worker, were vital to the journey, each member playing a crucial role in Leo’s well-being and his family’s support.

The Reeds shared, “We’ve had an incredible experience—not only the resources and specialty care that are co-located, and the multiple specialists we could access, but we were especially impressed by how child- and family-focused the IBD clinic is. They have resources that we didn’t need right when they were introduced, but have since used, including working with the IBD clinic dietitians, the social worker, and the Stanford Children’s dermatology and rheumatology specialists. More than this, we deeply appreciate that Dr. Goyal really listened to us and kept offering new treatment strategies for Leo, which is not common in our experience. Stanford has gone above and beyond and continues to do so to care for our family.”

Looking forward: Ongoing monitoring and hopeful outlook

The monitoring plan for Leo is already laid out for the next three to four years. This consists of having an intestinal ultrasound done once a year, verifying his calprotectin every three months, and doing his blood work every six months. Down the road, he’ll also get an echocardiogram of his heart, and his liver is being monitored, to rule out any (rare) side effects from the herbal medicine he’s taking for his IBD. Due to the ultrasound monitoring, he will need a colonoscopy in a few years and not as often.

About the team’s ability to use noninvasive, point-of-care ultrasound to check on the status of Leo’s IBD, Jenica says, “I loved seeing the inclusion of intestinal ultrasound at recent visits. This is a great example of how care differs at Stanford [Children’s], offering less-invasive and cutting-edge services, delivered with excellence and empathy, that greatly improve the experience for patients (and their families). We travel several hours just to have appointments with Dr. Goyal and the IBD team—and it’s well worth it to us.”

Leo’s parents are excited about his continued stability. Considering where he was just a few years ago, they couldn’t have imagined that other than taking his medicine and having regular testing, he would be in a place where his IBD is not holding him back. His personalized IBD treatment has given him back his childhood and ability to just be a kid, play with his friends, ride his bike, and engage in some sibling rivalry with his sister, Harper.

“It’s beautiful to see him living his best childhood right now. We’re so thankful to have met Dr. Goyal and the IBD clinic team. Working with them completely changed the course of Leo’s treatments and ability to be in remission right now. If you have to go through a scary and overwhelming experience, which was our crushing reality at the beginning, it makes a world of difference to experience the kindness of the team and resources at Stanford Children’s,” says Jenica. “They really created a sense of caring and community, and made it much easier to tolerate this journey.”

Learn more about the pediatric care for IBD at Stanford Medicine Children’s Health >