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What is VEOIBD?

Very early onset inflammatory bowel disease (VEOIBD) is any inflammatory bowel disease (IBD) diagnosed before age 6. It can include Crohn’s disease, ulcerative colitis, or IBD-unclassified (IBD-U).

Like IBD, VEOIBD causes long-term inflammation in the digestive tract. This can affect a child’s nutrition, growth, and development. Some children also experience inflammation in the skin, eyes, joints, liver, and bones.

Symptoms & Causes

What are the symptoms of VEOIBD?

Symptoms of VEOIBD can include:

  • Abdominal pain and cramping
  • Diarrhea
  • Blood in the stool
  • Lack of appetite, inability to gain weight, or unexpected weight loss
  • Urgency to move the bowels or difficulty controlling bowel movements
  • Fatigue
  • Fevers unrelated to infections
  • Skin rashes
  • Poor growth

What causes VEOIBD?

The exact cause of VEOIBD is not yet fully understood. Several factors likely play a role, including a child’s:

  • Genetics
  • Immune system (how the body fights infections)
  • Environment
  • Microbiome (tiny organisms) that normally live in the intestines

In approximately 10 percent of children with VEOIBD, it can be caused by a change in a single gene. Although this represents a minority of cases, single-gene causes are more common in VEOIBD than in IBD diagnosed at older ages. Many of these gene changes affect how the immune system works. Identifying a genetic cause can help guide treatment decisions.

Diagnosis & Treatments

How is VEOIBD diagnosed?

The first step is confirming whether your child has Crohn’s disease, ulcerative colitis, or IBD-unclassified (IBD-U). Doctors will also assess how much of the gastrointestinal (GI) tract is affected and how severe the inflammation is.

To do this, your child’s care team will review their medical and family history, perform a physical exam, and order additional tests. These may include:

  • Blood tests: These check blood counts, signs of inflammation, and markers of poor nutrition or vitamin deficiencies. In some cases, additional tests may evaluate how the immune system is functioning.
  • Stool sample: A sample of your child’s stools may be tested for blood, inflammation, or infection.
  • Endoscopy: An upper endoscopy examines the esophagus (food pipe), stomach, and the beginning of the small intestine using a thin, flexible tube with a light and camera. Doctors take small tissue samples (biopsies) to examine under a microscope.
  • Colonoscopy: This test uses a similar flexible tube to examine the large intestine and collect biopsies to better understand the disease.
  • Imaging studies: CT scans, MRIs, ultrasound, small bowel follow-through, or wireless capsule endoscopy may be used to examine parts of the small intestine that cannot be reached with endoscopy or colonoscopy.
  • Genetic testing: Genetic testing is especially important in VEOIBD. In some children, testing identifies a change in a single gene that is driving the disease. When this happens, it can significantly affect treatment decisions.

When a child is diagnosed with VEOIBD, doctors consider their age. Babies and toddlers with VEOIBD may have a subtype, such as infantile-onset IBD (diagnosed before age 2) or neonatal-onset IBD (diagnosed within the first 28 days of life). Children who are diagnosed at these very young ages may need specialized evaluation and care.

How is VEOIBD treated?

At Boston Children’s Hospital, children with VEOIBD are cared for in our multidisciplinary VEOIBD Program. We also evaluate patients of any age who have IBD related to an underlying immune system disorder (immunodeficiency). Our team of specialists tailors treatment to each child’s individual medical needs, including their specific diagnosis, disease severity, and whether a genetic cause is identified.

Most children with VEOIBD are treated with medications that reduce inflammation and calm the immune system. These may include anti-inflammatory drugs, immunomodulators, biologic medications, and small-molecule inhibitors. While these are not FDA-approved for children under 6 years of age, they are commonly used off-label to treat patients with VEOIBD.

In a minority of children with VEOIBD, testing may identify a genetic cause for the disease. In these cases, treatment can sometimes be tailored to the specific gene involved. Because genetic changes typically affect the way the immune system works, these children often work with an expert immunologist as part of their VEOIBD care team.

Examples of personalized treatment approaches include:

  • Anti-IL-1 medications for certain genetic conditions, including mutations in the IL-10 receptor (IL10RA, IL10RB) or mevalonate kinase (MVK) deficiency
  • Abatacept for children with LRBA or CTLA4-related conditions
  • Bone marrow (stem cell) transplant for select genetic disorders such as IL-10 receptor deficiency, chronic granulomatous disease, or Wiskott-Aldrich syndrome. In some cases, transplant can cure the VEOIBD.

Research & Innovation

Advancing treatment through research

Researchers around the world are working to advance our understanding of IBD and VEOIBD and improve treatment. As a leader in this effort, the VEOIBD Program at Boston Children’s is actively identifying genetic causes of the disease and developing new approaches to care. 

We are also proud to be a founding and leading institution of the international VEOIBD Consortium, the largest consortium in the world focused on bettering our understanding and treating patients with VEOIBD. Together, in partnership with our patients and families, we are shaping the future of VEOIBD research and care.

See the VEOIBD Program's research and innovation