GI Kids: IBD Resources
NASPGHAN Foundation
Pediatric-focused information and practical resources about Crohn’s disease, ulcerative colitis, appointments, nutrition, coping, and transitioning to adult care.
Visit external website (opens in a new tab)For parents & guardians
Supporting a Child or Teen With IBD
A new diagnosis can bring fear, questions, and uncertainty. This guide can help you understand what comes next, prepare for care, support your child at home and school, and take one step at a time.
IBD is not your child’s fault—and it is not yours.
Begin With the First Steps
01 · The First Few Weeks
You do not need to learn everything today
Begin by understanding your child’s diagnosis, learning the treatment plan, meeting the care team, and knowing whom to contact when questions arise.
- Write down the exact diagnosis and where inflammation was found.
- Keep the gastroenterology team’s contact information nearby.
- Maintain a current list of medications and instructions.
- Ask which symptoms should prompt a call to the care team.
- Record upcoming appointments, tests, and infusions.
- Bring your questions—and your child’s questions—to each visit.
02 · Understanding Your Child’s Diagnosis
Start with a short orientation
Inflammatory bowel disease (IBD) includes Crohn’s disease and ulcerative colitis. Both involve ongoing inflammation in the digestive tract, but the location and pattern can differ. Each child’s symptoms, care plan, and day-to-day experience can be different.
Use the site’s focused educational pages when you are ready to learn more:
03 · Partnering With the Care Team
Questions you are allowed to ask
You can ask for plain-language explanations, take notes, and revisit a question later. Consider bringing these questions to the care team:
- What type of IBD does my child have?
- Which areas of the digestive tract are affected?
- What is the goal of the recommended treatment?
- How will we know whether it is working?
- Which symptoms or side effects should we report?
- How will growth and nutrition be monitored?
- Whom should we contact after office hours?
- How can my child participate in these conversations?
Use this question guide to organize what you and your child want to discuss before the next gastroenterology appointment.
Questions to Ask Your Gastroenterologist04 · Talking With Your Child
Make room for honesty and questions
Use honest, age-appropriate language and share information gradually. What your child wants to know may change as they absorb the diagnosis.
- Give your child opportunities to ask questions.
- Acknowledge when you do not know an answer, and offer to find out together.
- Reassure your child that they did not cause IBD.
- Respect your child’s privacy.
- Avoid treating your child as fragile when they are feeling well.
- Remind them that IBD is something they have, not who they are.
05 · Appointments, Tests and Treatment
Prepare one step at a time
Before an appointment, write down changes, questions, current medicines, and what your child wants the team to know. Ask the care team how to prepare for blood or stool tests, imaging, or endoscopy, including what your child can expect before, during, and afterward.
For medication, infusions, or injections, ask for clear instructions about timing, storage, missed doses, possible side effects, and whom to contact with concerns. Invite your child to participate in ways that fit their age and comfort. Do not start, stop, or change medication without guidance from their healthcare professional.
06 · Food, Nutrition and Growth
Needs and tolerance can vary
There is no universal list of foods that works for every child with IBD. Food tolerance, appetite, and nutritional needs may change over time and during different phases of illness and recovery.
Discuss growth, nutrition, supplements, and any significant dietary restriction with your child’s pediatric gastroenterology team or an IBD-informed registered dietitian. This can help the family avoid unnecessary restriction while addressing your child’s individual needs.
07 · School and Accommodations
Plan for access, flexibility, and privacy
Consider meeting with an appropriate school contact to discuss what your child may need, including:
- Immediate and private bathroom access
- Water, snacks, and necessary supplies
- Absences for appointments or flares
- Flexibility with assignments and tests
- Rest breaks
- Medication and changing-clothes arrangements
- Plans for missed instruction
- Privacy and discreet communication
In the United States, Section 504 of the Rehabilitation Act is a federal civil-rights law. Some students with IBD may be eligible for a Section 504 plan when a disability substantially limits a major life activity. Eligibility and accommodations are determined individually through the school’s process; IBD does not automatically guarantee a plan or any particular accommodation. Families can ask the school’s Section 504 coordinator how to request an evaluation. This is general educational information, not legal advice.
08 · Emotional and Social Wellbeing
Notice what your child is carrying
Fear, embarrassment, anger, anxiety, and medical fatigue can appear at different times. Keep conversations open without making every interaction about IBD. Help your child stay connected with friendships and activities when possible, and make space for siblings’ feelings and questions while protecting your child’s privacy.
Contact your child’s care team when emotional concerns persist or begin to interfere with sleep, school, relationships, activities, treatment, or daily life. The team can help identify appropriate support.
09 · Helping Teens Build Independence
Practice together, gradually
Independence grows through supported participation—not by transferring responsibility too quickly. Depending on readiness, teens can begin:
- Learning medication names and schedules
- Asking questions during appointments
- Understanding symptoms and when to ask for help
- Practicing self-advocacy
- Taking part in conversations about privacy
- Preparing gradually for adult healthcare
Keep checking what your teen can manage now, where reminders are useful, and where an adult still needs to lead.
10 · Knowing When to Contact the Care Team
Create a personalized action plan
Ask your child’s healthcare team to help you make a written plan based on your child’s diagnosis and treatment. The plan can identify:
- Which diagnosis, treatment, medication, or IBD-related questions should go to the pediatric IBD team
- Which general health concerns should go to your child’s pediatrician
- How and when to use urgent or emergency services for severe or life-threatening concerns
Emergency care: Digestive Harmony is not an emergency or clinical service and does not monitor the website for urgent medical requests. If you believe your child may be experiencing a medical emergency, seek immediate assistance through the emergency medical services available where you are located.
Trusted resources
Trusted Resources for Children, Teens and Parents
Explore reliable pediatric IBD information, school-support materials, and resources created for young people and their families.
Planning With Your Child
Crohn’s & Colitis Foundation
Guidance for helping children and teenagers understand IBD and gradually participate in managing their care.
Visit external website (opens in a new tab)Taking IBD to School
Crohn’s & Colitis Foundation
Information for families about school communication, IBD accommodations, and Section 504 planning.
Visit external website (opens in a new tab)Your child is still your child
IBD may change parts of daily life, but it does not erase your child’s personality, interests, friendships, or future. You will learn what your child needs over time. For today, one informed and caring step is enough.