Staying Ahead of Pediatric IBD: A Parent’s Guide to IBD Treatment and Monitoring

The gut is at the core of children’s wellbeing, silently protecting them, fueling their lives and nourishing them into the adult they will become. In inflammatory bowel disease (IBD), the body wrongly perceives a threat and attacks the gut, frequently causing painful swelling in different parts of the digestive tract.

For the quarter of IBD patients whose disease begins in youth, the first sign of trouble often arrives when this vital system can no longer do its job effectively and a child’s growth doesn’t keep up with their usual pace or their classmates’ pace.

“Patients are often diagnosed at critical moments in their lives, early in childhood or adolescence, when they’re developing their own self-image and ideas about their abilities,” said David Ziring, MD, associate director of the Cedars-Sinai Guerin Children’s Pediatric Inflammatory Bowel Disease Program. “IBD shouldn’t keep them from achieving anything or becoming who they want to be in life.”

To realize that potential, children urgently need swift, specialized care.

“By halting the onslaught of pediatric IBD early, we can enable children to thrive,” Ziring emphasized.

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Understanding IBD Risks in Children

IBD is an umbrella term for a family of chronic conditions, the most common of which are Crohn’s disease and ulcerative colitis (UC). It can develop as early as infancy and is affecting more young people than ever before. More than 100,000 Americans under age 20 have IBD, according to a landmark 2024 study.

Children with IBD are also prone to more invasive and severe disease than adults who have IBD, with stomach cramping and bouts of urgent diarrhea sending them to the bathroom dozens of times every day and frequently keeping them home from school. Overtime, the spreading inflammation erodes the gastrointestinal system—and leaves open sores (ulcers) and scars in its wake. The longer IBD is left unrecognized and unchecked, the more extensive the damage.

To diagnose IBD in young patients, pediatric gastroenterology specialists consider a child’s family history. Having a parent or sibling with IBD can raise their likelihood by up to four times compared to children without a family history.

Interrupted Growth and Other IBD Symptoms and Signs

Pediatric gastroenterologists also conduct a thorough medical evaluation of each young patient’s unique set of IBD symptoms. Because Crohn’s disease and UC hinder nutrition, children with these conditions unintentionally lose weight and are often exhausted. Sustained rectal bleeding when they go to the bathroom can further deplete their energy through the loss of iron and, in turn, lead to anemia. These children also might spike fevers and complain of seemingly unrelated aches in their eyes, joints and other places well beyond the stomach.

Getting a clear view of their entire gut is vital to diagnosing IBD and stopping or slowing its progression. As they multiply, ulcers may penetrate deep into the intestines and even carve new passageways into other organs such as the skin or bladder, causing complications. And they predispose young people to colon and rectal cancers, which are surging in young adults.

I try to remove the term ‘flare’ from patients’ dictionaries, so that it’s not something to be expected if your IBD treatment is working as it should.

Diagnosing physicians also pinpoint where IBD is active. Crohn’s disease triggers scattered areas of inflammation and tends to affect the entire digestive tract, while ulcerative colitis is more persistent and concentrated in the colon and rectum.

The evaluation typically requires a combination of upper endoscopy and colonoscopy (camera-guided procedures performed under anesthesia) with biopsies for a closer look, as well as high-resolution MRI imaging. Guerin Children’s pioneering IBD specialists have long used this gold-standard method to diagnose and monitor IBD, while simultaneously advancing new detection tools.

A New Lens Into Pediatric IBD: Intestinal Ultrasound

Intestinal ultrasound is transforming care for kids with IBD. Ultrasounds provide a clear picture of childhood IBD and, crucially, can be done without sedation.

“In a 5-year-old who’s not going to be able to sit still for a 45-minute MRI with an IV and drink 1.5 liters of contrast, we can perform an ultrasound without any prep, anesthesia or IV, and it’s done in 10 minutes,” stressed Ziring, who performs more than 300 intestinal ultrasounds annually and advocates for more gastroenterologists to use the innovative tool.

“Even a kid who might not tolerate other imaging procedures can become comfortable with this,” he explained.

These simpler procedures could encourage more kids and families to keep up with their checkups, so doctors can keep a closer eye on their condition.  

Specialists also explain to families what they’re seeing in real time, carefully guiding and reassuring them through often scary diagnoses.

Personalizing IBD Treatment

Children with IBD face another massive obstacle to controlling the progressive condition: lack of access to pediatric specialists and dedicated treatments.

The F. Widjaja Inflammatory Bowel Disease Institute at Cedars-Sinai is meeting the pressing need with out-of-the-box thinking. Cedars-Sinai’s pediatric and adult IBD experts collaborate throughout patients’ lives, watching their patients’ guts closely to tailor care and prevent IBD’s most life-threatening complications, such as cancer.

“It has always been our dream to use multidimensional approaches that include genetics, blood tests and the microbiome (gut environment, including bacteria) to predict who will develop complicated IBD and who will respond best to specific treatments,” said Maria T. Abreu, MD, executive director of the institute. “Though we have made many advances, the greatest impact we have is providing compassionate, comprehensive care for patients of all ages.”

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At Guerin Children’s, doctors treat young people as individuals, focusing on a smooth, comfortable care plan that calms their stomachs, as well as their fears and stress.

“Our treatment philosophy is to provide the right drug to the right patient at the right time,” Ziring said.

Just two IBD medications, infliximab infusions and adalimumab injections, are FDA-approved for use in children. These immunosuppressing drugs curb inflammation to soothe the intestine. By restoring this tract, they help to reduce the frequency and increase control of bowel movements, so your child can sleep calmly through the night and feel better at school.

Though these drugs often work well, IV infusions can be tough for toddlers and small or anxious patients. Sometimes, Ziring prescribes adult IBD medications diluted into kid-friendly liquids or pills.

Antibiotics can also get rid of harmful bacteria, which is likely a root cause of IBD. Steroids and other medicines can support healing in the gut and help address inflammatory rashes, arthritis and eye complications.

Regular IBD Management for Young Patients

Traditionally, if given inadequate treatments, IBD patients will have exacerbations (commonly called flares) of bothersome symptoms out of the blue, sometimes tied to immune system spikes triggered by events like infections. Even when your child’s illness is in remission, the constant threat of a flare always looms.

“I try to remove the term ‘flare’ from patients’ dictionaries,” Ziring said, “so that it’s not something to be expected if your IBD treatment is working as it should.”

Specialists emphasize finding the best blend of medications for your child as close to diagnosis as possible, now aided by intestinal ultrasound. Regular ultrasounds enable doctors to quickly see signs of intestinal blockages and inflammation—such as swelling and higher blood flow—and adjust care.

Sometimes, however, widespread inflammation or scarring renders medication ineffective. In this case, your child might need surgery to partially remove a portion of their small intestine or entirely remove their damaged colon or rectum and then reroute their digestive tract.

Food Is Medicine for Children With IBD

Holistic care ensures kids with IBD can grow into healthy, confident adults.

Watch for whether your child’s tummy troubles are keeping them from activities they love, if they become so nervous about their chronic condition that they stop eating or sleeping, or if they feel they won’t ever get better. There are effective treatments for pediatric IBD, as well as for anxiety and depression—often starting with therapy.

“Our goal is to ensure that a child’s IBD doesn’t dictate their lives,” said Shervin Rabizadeh, MD, chair of pediatrics, director of pediatric gastroenterology and the Women’s Guild Distinguished Chair in Pediatrics at Guerin Children’s. “Children with IBD deserve to live their life to the fullest, despite their chronic disease.”

Food isn’t the enemy. In fact, diet is a cornerstone of IBD treatment, whether for supporting or completely replacing medications, enabling successful surgery, coping with uncomfortable symptoms or treating malnutrition. Gastroenterologists and dietitians can work with your son or daughter on special diets to get the nutrients and hydration they need, including carbohydrates, protein, vitamins and minerals, while cutting out foods that disrupt gut bacteria and irritate children’s stomachs.

Care plans might include:

• Crohn’s disease exclusion diet
• Mediterranean diet
• Specific carbohydrate diet
• Partial or exclusive enteral nutrition, in which food is delivered via a feeding tube directly to the gut, so nutrients are fully absorbed
• Iron supplementation for the roughly 70% of children and 42% of teens with IBD who are also anemic

Generally, Ziring encourages families to focus on eating fresh fruits and vegetables, lean meats, fatty fish and whole grains—and to avoid processed and ultra-processed foods with additives that promote IBD inflammation.

“Try to buy your foods from the produce aisle or the butcher and avoid foods that come in cardboard boxes, cans or plastic packages with names that you can’t even pronounce in the ingredients,” he suggests, “and that will go a long way.”