Healthcare
USA
Understanding your child’s IBD care team
Learn about the healthcare professionals involved in your child’s IBD care in the USA, what each person does, and how they work together to support your child’s health and wellbeing.
When your child is diagnosed with Crohn’s disease or ulcerative colitis, you may find yourself meeting several different healthcare professionals. Each person plays a role in helping your child manage their inflammatory bowel disease (IBD), monitor their health, and maintain their quality of life.
In the USA, children with IBD may receive care through a pediatric gastroenterology department, a dedicated IBD clinic, or a multidisciplinary team at a children’s hospital.
Understanding who does what can help you feel more confident navigating appointments, treatments, and flares.
👩⚕️ The pediatric gastroenterologist
The pediatric gastroenterologist is usually the lead specialist responsible for your child’s IBD care. These doctors specialise in digestive conditions affecting children and teenagers.
They help with:
Diagnosing Crohn’s disease or ulcerative colitis.
Developing and adjusting treatment plans.
Monitoring inflammation and disease activity.
Ordering investigations, including blood tests, stool tests, endoscopies, and imaging.
Managing flares and medication side effects.
Monitoring growth, development, and nutritional health.
Some gastroenterologists have additional expertise in pediatric IBD and work within specialist IBD programs.
💊 The IBD nurse or nurse practitioner
IBD nurses and nurse practitioners can be an important point of contact for families. Their responsibilities vary between hospitals and clinics, but they often help coordinate care and answer questions between appointments.
They may help with:
Explaining medications and treatment plans.
Coordinating blood tests and monitoring.
Providing advice about symptoms and possible flares.
Arranging appointments and communicating with the medical team.
Supporting families with practical questions about living with IBD.
Ask your child’s clinic who you should contact if symptoms change or you have questions between appointments.
🥗 The registered dietitian
Nutrition is an important part of caring for a growing child with IBD. A registered dietitian can help your family understand how food, nutrition, and growth relate to your child’s condition.
They may help with:
Assessing nutritional needs and monitoring growth.
Identifying nutritional deficiencies.
Supporting adequate calorie, protein, vitamin, and mineral intake.
Managing dietary challenges during flares.
Discussing specialised nutritional treatments when appropriate.
Helping your child maintain a balanced diet without unnecessary food restrictions.
There is no single diet that works for every child with IBD. Dietary changes should be discussed with your child’s healthcare team, particularly during a flare or when growth is affected.
🧠 The psychologist or mental health professional
Living with IBD can be emotionally challenging for children and their families. Worry about symptoms, hospital visits, medication, school absences, and feeling different from friends can affect a child’s wellbeing.
A psychologist or other qualified mental health professional can help your child develop strategies to manage:
Anxiety about symptoms, tests, and procedures.
Stress related to school and friendships.
Worries about bathroom access or having an accident.
Frustration about living with a long-term condition.
The emotional impact of diagnosis, treatment, and flares.
Psychological support does not mean that symptoms are all in your child’s head. It helps children cope with the emotional challenges of IBD alongside their medical treatment.
🏥 Other healthcare professionals
Depending on your child’s needs, their care team may include other specialists.
Pediatric surgeon
A surgeon may become involved if your child needs an operation or develops a complication that requires surgical assessment.
Pharmacist
A pharmacist can help explain how medications should be taken, discuss potential interactions, and answer questions about safe medication use.
Primary care provider
Your child’s pediatrician or primary care provider helps manage general health needs, routine vaccinations, infections, and other childhood health concerns. They can also communicate with the gastroenterology team.
Social worker
A hospital social worker may help families navigate practical challenges, including access to support services, financial assistance, insurance concerns, and the impact of treatment on family life.
Child life specialist
Some children’s hospitals have child life specialists who help children understand medical procedures and cope with hospital experiences through age-appropriate explanations, preparation, and play.
Not every child will need all these professionals. The team will depend on your child’s condition, treatment, and individual circumstances.
🤝How does an IBD care team work in the USA?
In the United States, the way your child’s care is organised can vary between hospitals, clinics, and insurance arrangements.
Some children attend a dedicated pediatric IBD clinic where several professionals work together. Others see their gastroenterologist separately and receive referrals to additional services when needed.
Your child may also receive care from local providers while attending a specialist centre for more complex treatment.
It is helpful to understand:
Who coordinates your child’s overall IBD care.
Which healthcare professional to contact with urgent concerns.
How to access advice outside regular clinic hours.
Who organises medication prescriptions and monitoring tests.
Whether referrals are needed for dietitians, psychologists, or other specialists.
How your insurance covers appointments and additional services.
📋 How can you work effectively with your child’s care team?
As a parent, you play an important role in helping your child receive coordinated care. You know your child’s usual behaviour, symptoms, and daily challenges, and sharing these observations can help the team understand how IBD affects their life.
Here are some practical ways to stay organised:
Keep a symptom record: Note changes in bowel habits, abdominal pain, fatigue, appetite, and other symptoms.
Bring questions to appointments: Write down concerns about medications, test results, school, nutrition, or emotional wellbeing.
Keep medication information updated: Maintain a list of medications, doses, allergies, and any side effects.
Understand the monitoring plan: Ask which blood tests, stool tests, and other investigations your child needs and how often.
Know who to contact: Make sure you have the clinic’s contact details and instructions for urgent concerns.
Share information between providers: Ensure your child’s primary care provider and other specialists know about important treatment changes.
As your child grows older, encourage them to ask questions and take part in discussions about their care. Gradually building these skills can help them become more confident managing IBD as teenagers and young adults.
❤️ What if you feel your child needs more support?
If your child is struggling with symptoms, treatment, nutrition, school, or emotional wellbeing, tell their gastroenterology team. You do not need to wait until the next routine appointment if you have concerns.
You can ask whether additional support is available through an IBD nurse, dietitian, psychologist, social worker, or another specialist.
If you feel your concerns are not being addressed, you can ask for clarification, request a care planning discussion, or seek a second medical opinion.
🔗 Helpful resources
Crohn’s & Colitis Foundation: https://www.crohnscolitisfoundation.org/ — Education and support for people living with IBD and their families.
Your child’s pediatric gastroenterology clinic: Ask for information about the professionals involved in your child’s care and how to contact them.
Your health insurance provider: Check coverage and referral requirements for additional healthcare professionals.
Your child’s IBD care team is there to support more than just their digestive symptoms. By working together, these professionals can help address your child’s medical, nutritional, emotional, and everyday needs so your family feels better equipped to navigate life with IBD.
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