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

Youngster with very early onset IBD achieves remission with the assistance of Stanford Medication Kids’s Well being IBD specialists

5 years in the past, Hayes and Jenica Reed confronted an sudden problem when their 5-year-old son, Leo, developed extreme gastrointestinal points akin to diarrhea, belly ache, and blood in his stools, in addition to fever, lethargy, and eye, muscle, and joint signs. A number of emergency room visits, hospitalizations, and appointments with specialists led to a analysis that felt bewildering: very early onset inflammatory bowel illness (IBD). Whereas the situation was unfamiliar to the Reeds, they rapidly realized its rarity in kids below 6 and the complexity it entails.

Roughly 6%–15% of all kids recognized with IBD can get the disease earlier than they flip 6 years outdated. And when IBD is recognized earlier than age of 6, as in Leo’s case, it’s known as very early onset IBD (VEO-IBD).

To alleviate his gastrointestinal (GI) signs, Leo’s neighborhood GI physician prescribed steroids and mesalamine (a kind of anti-inflammatory drug and a standard remedy for IBD). Sadly, Leo skilled a uncommon response to the remedy and required hospitalization—he offered with a stiff neck and fever, which is a facet impact that may be mistaken for different severe circumstances. His care staff determined to cease his IBD medication, and his gastrointestinal signs flared up rapidly. At that time, Leo was prescribed biologicals. This led the Reeds to hunt a second opinion at Stanford Medicine Children’s Health’s Center for IBD and Celiac Disease, the place they met Alka Goyal, MD, a pediatric gastroenterologist and the affiliate chief of medical affairs, in March 2021.

Turning level: Assembly Dr. Goyal and the Stanford Medication Kids’s Well being staff

Upon Leo’s evaluation, Dr. Goyal acknowledged the distinctive challenges offered by his very early onset IBD. Kids recognized at such a younger age usually face a extra aggressive course of colitis (irritation of the big gut lining)—which is more durable to deal with—and require cautious administration to steadiness their growing immune methods with the required medical therapies.

Beforehand, in his hometown close to Sacramento, California, Leo underwent an endoscopy, which didn’t have outstanding findings, and a colonoscopy, which confirmed in depth colitis. Additional checks ordered by Dr. Goyal at Lucile Packard Children’s Hospital Stanford included stool research that sought to rule out infections akin to Clostridioides difficile (C. diff), amongst different issues, which might have made his gastrointestinal signs and irritation worse. At the moment, Leo was taking a small dose of sulfasalazine (one other anti-inflammatory drug), prescribed by Dr. Goyal, to assist enhance his signs with out immune suppression (which biologicals and steroids are identified to trigger). Whereas he was on a small dose of sulfasalazine and with out taking steroids, Leo’s signs have been flaring.

Dr. Goyal launched vancomycin as a bridging remedy, whereas progressively growing sulfasalazine, to convey Leo some reduction. In some circumstances, a short-term course of antibiotics can independently be useful to regulate the colitis, along with anti-inflammatory medication, that are generally prescribed for sufferers like Leo.

After Leo achieved medical remission, vancomycin was stopped. A number of months later, his course of remedy was difficult by C. diff infections in his stools, requiring vancomycin remedy once more.

Thirty to 40 p.c of sufferers with IBD can typically get C. diff over their lifetime, and the presence of the C. diff an infection often signifies a extra aggressive course of colitis in contrast with that in sufferers who don’t have it. Leo was recognized with recurrent C. diff that was efficiently handled at a later time with a fecal microbiota transplant—an efficient remedy that was made obtainable commercially by the Meals and Drug Administration (FDA) at a number of facilities within the nation, below enforcement discretion (permitting it to bypass the prolonged FDA approval course of).

This holistic strategy, incorporating antibiotics, examined therapies for IBD (i.e., sulfasalazine), and a then-novel process for recurrent C. diff (fecal transplant), set the stage for Leo’s journey towards remission, however they weren’t sufficient to maintain him in remission.

New horizons: Integrating an natural answer and attaining remission

Within the quest for optimum short-term and enduring therapies for Leo’s IBD, Dr. Goyal thoughtfully built-in the Reeds’ needs as mother and father and their choice for different options. Using in depth analysis and insightful discussions, Dr. Goyal launched a promising natural remedy she had found within the medical literature. The proof for the brand new IBD remedy was optimistic in bettering the administration of colitis in sufferers like Leo.

“Leo responded exceptionally properly to this new remedy, due to the multidisciplinary, patient- and family-centric strategy,” Dr. Goyal affirms. “Our purpose was not solely to handle his IBD signs successfully, however to maintain his long-term well being with the least-invasive intervention attainable whereas making an allowance for the mother and father’ priorities.”

The Reeds, who’ve skilled backgrounds in analysis and consuming knowledge, actively researched Leo’s attainable remedy choices and the most recent IBD analysis from the beginning of his analysis. Grateful for the devoted care Leo acquired at Stanford Kids’s, they’ve expressed their gratitude: “Having Dr. Goyal as Leo’s physician to discover with us the perfect remedy choices for Leo and understanding the credibility of this pure remedy was crucial on this technique of discovering the perfect answer for our son.”

The success of Leo’s remedy strategy was demonstrated by his means to achieve weight, and to have regular blood take a look at outcomes and regular ranges of fecal calprotectin (a protein that’s measured within the stool of IBD sufferers). If the colon shouldn’t be infected, the worth of fecal calprotectin is anticipated to be below 50 (with a purpose of staying below 150 for IBD sufferers). In Leo’s case, his calprotectin was 1,620 earlier than his care was transferred to Lucile Packard Kids’s Hospital Stanford; after roughly three years of care below Dr. Goyal, it has maintained regular ranges (11 in December 2024 and 21 in Might 2025). Moreover, his colonoscopy in Might 2025 demonstrated full therapeutic.

Household-centric care: The multidisciplinary strategy at Stanford Kids’s

The outstanding response of Leo’s physique to the customized remedy strategy to IBD, which included novel and normal therapies, has led to his deep remission. His colonoscopy, endoscopy, and biopsies carried out in Might 2025 confirmed this optimistic consequence. “The care that was offered to Leo underscores our IBD and Celiac Disease Center’s willingness to have interaction in customized medication, by using a multimodal strategy to therapies and diagnostic strategies,” says Dr. Goyal.

The built-in efforts of the multidisciplinary Stanford Kids’s IBD team, which incorporates dietitians, nurse specialists, a psychologist, and a social employee, have been important to the journey, every member taking part in a vital function in Leo’s well-being and his household’s assist.

The Reeds shared, “We’ve had an unbelievable expertise—not solely the sources and specialty care which can be co-located, and the a number of specialists we might entry, however we have been particularly impressed by how child- and family-focused the IBD clinic is. They’ve sources that we didn’t want proper once they have been launched, however have since used, together with working with the IBD clinic dietitians, the social worker, and the Stanford Kids’s dermatology and rheumatology specialists. Greater than this, we deeply admire that Dr. Goyal actually listened to us and saved providing new remedy methods for Leo, which isn’t widespread in our expertise. Stanford has gone above and past and continues to take action to look after our household.”

Wanting ahead: Ongoing monitoring and hopeful outlook

The monitoring plan for Leo is already laid out for the following three to 4 years. This consists of getting an intestinal ultrasound executed every year, verifying his calprotectin each three months, and doing his blood work each six months. Down the street, he’ll additionally get an echocardiogram of his coronary heart, and his liver is being monitored, to rule out any (uncommon) negative effects from the natural medication he’s taking for his IBD. As a result of ultrasound monitoring, he’ll want a colonoscopy in a number of years and never as usually.

In regards to the staff’s means to make use of noninvasive, point-of-care ultrasound to examine on the standing of Leo’s IBD, Jenica says, “I beloved seeing the inclusion of intestinal ultrasound at current visits. This can be a nice instance of how care differs at Stanford [Children’s], providing less-invasive and cutting-edge providers, delivered with excellence and empathy, that vastly enhance the expertise for sufferers (and their households). We journey a number of hours simply to have appointments with Dr. Goyal and the IBD staff—and it’s properly value it to us.”

Leo’s mother and father are enthusiastic about his continued stability. Contemplating the place he was only a few years in the past, they couldn’t have imagined that aside from taking his medication and having common testing, he could be in a spot the place his IBD shouldn’t be holding him again. His customized IBD remedy has given him again his childhood and talent to only be a child, play along with his buddies, journey his bike, and have interaction in some sibling rivalry along with his sister, Harper.

“It’s lovely to see him residing his finest childhood proper now. We’re so grateful to have met Dr. Goyal and the IBD clinic staff. Working with them fully modified the course of Leo’s therapies and talent to be in remission proper now. If you need to undergo a scary and overwhelming expertise, which was our crushing actuality at first, it makes a world of distinction to expertise the kindness of the staff and sources at Stanford Children’s,” says Jenica. “They actually created a way of caring and neighborhood, and made it a lot simpler to tolerate this journey.”

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