Special situations
When a child is diagnosed with Crohn's disease, the questions come fast. Will they grow normally? Can they still play sports? What about school? Roughly 20 to 25 percent of people with inflammatory bowel disease are diagnosed before age 18, with the majority presenting during early adolescence. And the numbers are climbing: U.S. pediatric IBD prevalence increased by 133 percent between 2007 and 2016, with over 100,000 American youth now living with the condition. This guide covers what parents and teens need to know about pediatric Crohn's, from the ways it differs from adult-onset disease to the dietary therapies, school strategies, and self-management skills that make a real difference.
How Pediatric Crohn's Differs from Adult-Onset Disease
Crohn's disease in children is not simply a smaller version of the adult condition. Pediatric Crohn's tends to be more extensive at diagnosis, often involving the upper gastrointestinal tract and large portions of the small intestine, a pattern called pan-enteric involvement. The most common presenting symptom is abdominal pain, occurring in nearly half of newly diagnosed children. But many children first show up in a doctor's office not with classic GI complaints, but with poor weight gain, slowed growth, or delayed puberty.
This is one of the reasons diagnosis can take longer in kids. A child who seems "just small for their age" or who has vague abdominal discomfort may not immediately raise the alarm for Crohn's. There is no single test that confirms the diagnosis. Instead, doctors use a combination of blood work (looking for elevated inflammatory markers and anemia), stool tests for calprotectin, endoscopy of both the upper and lower GI tract, and imaging such as magnetic resonance enterography to map the extent of disease.
Because pediatric Crohn's is often more widespread at diagnosis and has a longer runway ahead, treatment decisions carry weight that parents should understand clearly. The European Society of Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines recommend considering early biologic therapy for children with extensive disease, deep ulcers, perianal involvement, or growth failure, because starting biologics earlier is more effective than waiting until the disease progresses.
Growth, Nutrition, and Why They Matter So Much
Growth failure is one of the defining challenges of pediatric Crohn's. Up to 85 percent of children diagnosed with Crohn's experience some degree of nutritional deficiency, linear growth delay, or delayed puberty. By strict height-for-age criteria, roughly 39 percent show growth failure at diagnosis. The causes stack up: chronic inflammation suppresses growth hormone signaling, active disease reduces appetite, malabsorption prevents nutrients from reaching the bloodstream, and corticosteroids (historically a first-line treatment) directly inhibit bone growth.
This is why pediatric gastroenterologists monitor growth velocity, bone density, and pubertal development as carefully as they track disease activity scores. The goal is to achieve remission before the growth window closes, ideally before or during early puberty when catch-up growth is still possible. For parents, this means that growth charts are a treatment metric, and a child who is falling behind on their curve warrants a conversation with their GI team about whether current therapy is aggressive enough.
Nutritional deficiencies in pediatric Crohn's commonly include iron, vitamin D, zinc, folate, and vitamin B12. Regular blood work to monitor these levels, combined with targeted supplementation, is a standard part of care. But the bigger nutritional story in pediatric Crohn's involves dietary therapies that can actually treat the disease itself.
Exclusive Enteral Nutrition: A Steroid-Sparing Treatment
Exclusive enteral nutrition (EEN) is one of the most important treatment tools in pediatric Crohn's, yet many parents have never heard of it before diagnosis. EEN involves consuming a liquid formula as the sole source of nutrition for six to eight weeks, with no other food. It sounds restrictive, and it is. But the evidence is strong: meta-analyses show EEN is as effective as corticosteroids at inducing clinical remission in children with Crohn's, while being superior to steroids at promoting mucosal healing and improving nutritional status.
For a growing child, that distinction matters enormously. Corticosteroids suppress growth, weaken bones, and carry a long list of side effects. EEN avoids all of that while simultaneously improving BMI z-scores and bone health. Children managed with EEN also show long-term reduction in corticosteroid exposure compared to those who start with steroids.
The practical challenge is compliance. Drinking formula exclusively for weeks, with no solid food, is difficult for anyone, let alone a teenager who wants to eat lunch with friends. Strategies that help include using a variety of formula flavors, consuming formula through a straw at cold temperatures (which masks taste), and framing the treatment period as time-limited with a clear end date. Some children receive formula through a nasogastric tube overnight, which reduces the daytime burden. Involving the child in the decision and explaining the "why" behind EEN improves buy-in considerably.
The Crohn's Disease Exclusion Diet
For families who find EEN too difficult to sustain, or as a next step after EEN induction, the Crohn's Disease Exclusion Diet (CDED) is gaining strong clinical support. The CDED is a whole-food diet that eliminates specific components thought to drive inflammation through the gut microbiome and intestinal barrier. Unlike EEN, the CDED allows real food, which makes it significantly easier for children and families to follow.
A 2024 randomized controlled trial found that two weeks of EEN followed by the CDED maintained remission in most pediatric patients through 24 weeks, with meaningful improvements in BMI. A systematic review confirmed that the CDED combined with partial enteral nutrition shows better tolerance and higher adherence rates compared to EEN alone, while delivering comparable remission results.
The CDED works in phases. The first phase is the most restrictive, eliminating processed foods, animal fats, wheat, dairy, and certain additives. Over subsequent phases, foods are gradually reintroduced while continuing partial formula supplementation. The phased structure gives families a concrete progression to follow and reduces the overwhelming feeling of permanent dietary restriction. Working with a dietitian experienced in CDED is important for ensuring nutritional adequacy, especially for growing children.
Navigating School with Crohn's
School is where the daily reality of Crohn's meets institutional rules that were not designed with chronic illness in mind. A child who needs urgent bathroom access, misses school during flares, or cannot participate in certain activities needs formal protections. In the United States, children with Crohn's disease qualify for a Section 504 plan, a legally binding document that requires schools to provide specific accommodations.
Common 504 accommodations for students with Crohn's include unrestricted bathroom access (including a pass that does not require asking for permission), extended time on tests with "stop the clock" provisions during bathroom breaks, the ability to make up missed assignments without grade penalties, access to food and water throughout the day, and a plan for remote learning during flares. The Crohn's and Colitis Foundation provides a template 504 plan specifically designed for IBD that parents can bring to school meetings.
Starting the 504 process early is worth the effort. Parents should request the plan in writing, provide medical documentation from the child's GI team, and be specific about the accommodations needed. Schools are required to respond within 30 days. For children whose Crohn's significantly impacts their ability to learn, an Individualized Education Plan (IEP) may provide even more comprehensive support, including modified coursework and additional educational services.
Beyond formal accommodations, helping a child decide what and how much to share with teachers and classmates is a conversation worth having. Some children prefer privacy; others find that brief, matter-of-fact explanations reduce the social awkwardness of frequent bathroom trips. There is no single right approach, but discussing it proactively gives the child a sense of control.
Building Self-Management Skills in Teens
The transition from parent-managed to self-managed Crohn's care is one of the most important developmental tasks for a teenager with the disease. Research from the Crohn's and Colitis Foundation suggests that self-management skill-building should begin around age 12, with a gradual shift in responsibility over the teenage years. By the time a young adult transitions to an adult gastroenterologist, typically between ages 18 and 21, they should be able to manage medications independently, communicate directly with their care team, recognize warning signs that need attention, and understand their insurance and prescriptions.
Studies on transition readiness consistently find that the most important factor for successful transition is the ability to make informed decisions about IBD management, followed by independent communication with physicians. Structured transition programs produce measurably better outcomes: lower hospital admissions, fewer missed appointments, reduced surgical interventions, and better medication adherence compared to patients who transition without a formal program.
Parents can support this process in concrete ways. Start by having your teen attend a portion of their GI appointments without you in the room. Teach them to track their symptoms consistently so they can report accurately to their doctor. Let them manage their medication schedule with reminders rather than prompts. And help them understand their diagnosis well enough to explain it to a college health center, an employer, or a new adult gastroenterologist.
What Parents Can Do Right Now
A Crohn's diagnosis in a child changes the family's landscape, but the trajectory is more manageable today than at any point in the past. Dietary therapies like EEN and CDED offer steroid-sparing remission options. Early biologic therapy can prevent disease progression. School accommodations are legally protected and straightforward to obtain. And the gradual development of self-management skills sets teenagers up for healthy independence.
The most valuable thing a parent can do is stay organized: track symptoms, growth, lab results, and medications in one place so you can spot trends and communicate effectively with your child's care team. As your child grows, that tracking habit becomes theirs, building the self-advocacy skills they will carry into adulthood.