Pediatrics: Caring for Kids & Teens With IBD

Children and teens with Crohn’s disease or ulcerative colitis have growing bodies and developing lives, so care must look beyond gut symptoms. Pediatric IBD care focuses on controlling inflammation while protecting growth, puberty, bone health, nutrition, school, and emotional well-being. This article outlines how teams monitor growth, support nutrition, plan vaccinations, and help families cope and stay organized.

Key Takeaways

• Pediatric IBD care aims to control inflammation and support normal growth, puberty, and bone health.

• Regular tracking of height, weight, and puberty is essential, especially during growth spurts.

• Many children need extra calories, supplements, or formula-based nutrition at some stages of their care. (pubmed.ncbi.nlm.nih.gov)

• Children with IBD should follow routine vaccine schedules, with careful timing of live vaccines around immunosuppressive drugs. (pubmed.ncbi.nlm.nih.gov)

• Emotional support, school planning, and clear roles at home help the whole family cope and build resilience. (academic.oup.com)

Why Pediatric IBD Is Different

Inflammatory bowel disease that starts in childhood often behaves differently from adult-onset disease. Children may have more extensive inflammation and a higher chance of needing strong medicines like immunomodulators or biologics. (pubmed.ncbi.nlm.nih.gov)

Because bodies are still developing, untreated inflammation can slow height gain, delay puberty, and weaken bones. Quality of life is also shaped by school, friendships, and family routines, so pediatric guidelines place growth, bone health, and emotional development alongside control of gut symptoms. (academic.oup.com)

Growth and Puberty

How growth is monitored

At each visit, pediatric teams usually:

• Measure height and weight and plot them on growth charts.

• Look at growth velocity (how fast height is increasing over months, not just a single number). (pubmed.ncbi.nlm.nih.gov)

• Check body mass index (BMI) and sometimes mid-parental height (genetic height potential).

• Ask about puberty milestones, such as breast or testicular development and menstrual periods.

Warning signs include dropping percentiles on the growth chart, not growing during expected growth spurts, delayed puberty compared with peers, or unexplained weight loss.

Why growth problems happen

Several factors can slow growth in pediatric IBD:

• Ongoing gut inflammation, even when symptoms look mild. (academic.oup.com)

• Poor appetite, nausea, or pain that limits eating.

• Malabsorption of nutrients, especially with small bowel Crohn’s disease.

• Long or repeated courses of systemic corticosteroids, which can impair growth and bone formation. (pubmed.ncbi.nlm.nih.gov)

Because of this, pediatric guidelines try to minimize steroid exposure and favor steroid-sparing treatments when possible.

Supporting healthy growth

When growth slows, teams often:

• Intensify treatment to calm inflammation more fully.

• Work with a pediatric dietitian to increase calories and protein safely.

• Check vitamin D, calcium, and other nutrients important for bone and growth. (academic.oup.com)

• Consider bone density scans (DEXA) in children with long-standing disease, steroid use, or fractures.

Some children may see a pediatric endocrinologist if puberty is significantly delayed or if adult height is at risk.

Nutrition in Kids and Teens With IBD

Everyday nutrition goals

The basic goals are:

• Enough calories to support growth and activity.

• Regular meals and snacks with protein, carbohydrates, fats, fruits, and vegetables as tolerated.

• Adequate fluids, especially during flares or hot weather.

A pediatric dietitian can help families adapt meals during flares and remission, avoid unnecessary restriction, and keep eating enjoyable and social.

Extra nutrition support

Many children with IBD need extra nutrition at some point:

• Oral nutrition supplements (high-calorie shakes) between meals.

• Tube feeding at night, especially if weight gain is poor.

• Exclusive enteral nutrition (EEN), where all calories come from a special formula for several weeks, is a first-choice treatment to induce remission in many children with Crohn’s disease. It helps control inflammation and can support catch-up growth with fewer side effects than steroids. (pubmed.ncbi.nlm.nih.gov)

Some centers also use partial enteral nutrition, where a large portion of calories comes from formula and the rest from carefully chosen foods.

Vitamins and minerals

Common deficiencies in pediatric IBD include:

• Iron, folate, and vitamin B12, which affect energy, learning, and red blood cells.

• Vitamin D and calcium, which affect bone strength.

• Zinc and other trace minerals, important for healing and taste. (academic.oup.com)

Regular blood tests help identify gaps. Supplements are usually tailored to the child’s lab results and diet, rather than taken blindly.

Vaccinations in Pediatric IBD

Children with IBD should generally follow the same routine vaccine schedule as other children, with a few extra steps. (pubmed.ncbi.nlm.nih.gov)

Checking status early

Ideally, at or soon after diagnosis, the care team:

• Reviews past vaccine records.

• Draws blood tests for immunity to infections like varicella and hepatitis B if the history is unclear. (journals.lww.com)

• Gives any missing vaccines before starting long-term immunosuppressive therapy whenever possible.

Inactivated (non-live) vaccines

These vaccines do not contain live germs and are considered safe even for children on biologics, thiopurines, methotrexate, or steroids, although responses may be slightly lower. (pubmed.ncbi.nlm.nih.gov)

Important inactivated vaccines include:

• Yearly injectable influenza vaccine.

• COVID-19 vaccines, according to current national guidance.

• Tdap and regular tetanus boosters. (journals.lww.com)

• Pneumococcal vaccines, often with both PCV and PPSV formulations for children on significant immunosuppression. (academic.oup.com)

• Hepatitis A and B, which are safe and immunogenic in children with IBD. (journals.lww.com)

• Human papillomavirus (HPV) vaccine, recommended for preteens and teens of all genders. (journals.lww.com)

Live vaccines

Live vaccines (for example, MMR, varicella, and the nasal spray flu vaccine) contain weakened germs. Guidelines generally avoid live vaccines in children who are currently on significant immunosuppression, such as systemic steroids at higher doses, thiopurines, methotrexate, biologics, or JAK inhibitors. (pubmed.ncbi.nlm.nih.gov)

When needed, live vaccines are usually given:

• Before starting long-term immunosuppressive medicines, with enough time for the immune system to respond.

• Only after careful discussion with the gastroenterologist and, in some cases, an infectious disease specialist.

Some small studies suggest that varicella vaccine may be tolerated even in selected immunosuppressed children, but this is still an area for specialist judgment rather than routine practice. (pubmed.ncbi.nlm.nih.gov)

Families should always review vaccine plans with the pediatric IBD team, since recommendations can change as new evidence appears.

Family, School, and Emotional Support

Emotional impact

IBD in childhood can affect body image, confidence, and mood. Children may worry about bathroom access, accidents, or appearing “small” compared with classmates. Teens may fear missing social events or sports, or may struggle with taking medicines in front of peers.

Guidelines highlight quality of life as a core outcome, not just symptom scores. (academic.oup.com)

Roles at home

Helpful patterns often include:

• Parents or caregivers managing complex tasks, such as scheduling visits and handling pharmacy issues, while gradually involving older children in simpler tasks.

• Clear routines for medications, lab visits, and symptom tracking.

• Open, age-appropriate conversations about the disease, with space for questions and feelings.

• Attention to siblings, who may feel worried, excluded, or jealous of the extra attention.

School and activities

Most children with well-controlled IBD can attend school and participate in sports and clubs. Practical supports can include:

• Private bathroom access and permission to leave class quickly.

• Flexibility with attendance during flares or hospital stays.

• Adjusted physical activity during periods of pain, fatigue, or anemia.

In the United States, many families work with schools on a 504 Plan or similar arrangement to formalize accommodations.

When to seek extra support

A mental health professional with experience in chronic illness can help if a child or teen:

• Withdraws from friends or activities.

• Shows ongoing sadness, anxiety, or anger.

• Refuses school or medical visits.

• Dramatically restricts eating outside clear medical guidance.

Pediatric IBD centers often include psychologists, social workers, and child life specialists who can offer counseling, coping skills, and support groups for both children and caregivers.