National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Pediatric Crohn's disease


Other Names:
Pediatric onset Crohn's disease; Crohn's disease, pediatric
Categories:
Crohn's disease is a type of inflammatory bowel disease (IBD), the general name for conditions that cause inflammation in the gastrointestinal (GI) tract. Common signs and symptoms include abdominal pain and cramping, diarrhea, and weight loss. Other general symptoms include feeling tired, nausea and loss of appetite, fever, and anemia. Complications of Crohn's disease may include intestinal blockage, fistulas, anal fissures, ulcers, malnutrition, and inflammation in other areas of the body. Crohn's disease can occur in people of all age groups but is most often diagnosed in young adults.[1][2] The exact cause is unknown, but is thought to be due from a combination of certain genetic variations, changes in the immune system, and the presence of bacteria in the digestive tract.[1][2][3]  Many of the major genes related to Crohn disease, including NOD2, ATG16L1, IL23R, and IRGM, are involved in immune system function. The disease is not inherited but it appears to run in some families because in about 15% of the cases the disease is present in more than one relative.[3] 

Treatment is aimed at relieving symptoms and reducing inflammation, and may include diet and medication, but some people require surgery.[1][2] Surgery often involves removal of the diseased segment of bowel (resection), the two ends of healthy bowel are then joined together (anastomosis). In about 30% of people who have surgery for Crohn’s disease symptoms may come back within three years and up to 60% will have recurrence within ten years.[4]
Last updated: 5/11/2018

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

  • Adalimumab (Brand name: Humira) - Manufactured by AbbVie Inc.
    FDA-approved indication: Treatment of Juvenile Idiopathic Arthritis. Reducing signs and symptoms and inducing and maintaining clinical remission in patients 6 years of age and older with moderately to severely active Crohn's disease who have had an inadequate response to corticosteroids or immunomodulators such as azathioprine, 6-mercaptopurine, or methotrexate.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information
  • Infliximab (Brand name: Remicade) - Manufactured by Centocor, Inc.
    FDA-approved indication: For reducing signs and symptoms and inducing and maintaining clinical remission in pediatric patients with moderately to severely active Crohn's disease who have had an inadequate response to conventional therapy.
    National Library of Medicine Drug Information Portal
    Medline Plus Health Information

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Pediatric Crohn's disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Social Networking Websites

Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.

Financial Resources

  • Good Days provides help to patients with life-altering conditions. Assistance includes help with the cost of medications and travel.
  • Patient Access Network Foundation (PAN Foundation) has Assistance Programs for those with health insurance who reside in the United States. The disease fund status can change over time, so you may need to check back if funds are not currently available. 
  • The Assistance Fund provides various services, including education and financial aid, to help patients with a chronic or serious illness cover the cost of FDA-approved medications. Patients must be U.S citizens or permanent residents.

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • Just Like Me! , a Web site for kids and teens with ulcerative colitis or Crohn's disease sponsored by the Crohn's & Colitis Foundation of America (CCFA).

In-Depth Information

  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Pediatric Crohn's disease. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know.

  1. Crohn's disease. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). September 2014; http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/crohns-disease/Pages/facts.aspx.
  2. Walfish AE & Sachar DB. Crohn Disease. Merck Manual Consumer Version. 2017; http://www.merckmanuals.com/home/digestive-disorders/inflammatory-bowel-diseases-ibd/crohn-disease?qt=&sc=&alt=.
  3. Crohn disease. Genetics Home Reference. 2018; http://ghr.nlm.nih.gov/condition/crohn-disease.
  4. What is Crohn's Disease?. Crohn's & Colitis Foundation of America. 2016; http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/.