Very Early Onset IBD
Around 6–15% of children can get inflammatory bowel disease (IBD) before they turn 6 years old. When IBD is diagnosed before age 6, it's called very early onset (VEO) IBD. While the diagnosis can be overwhelming for families, it is important to know that treatments are available to help manage symptoms and improve quality of life. With proper care, many children with VEO IBD can thrive and lead fulfilling lives.
- Types of VEO IBD
There are different names for VEO IBD depending on how old the child is when they are diagnosed:
- VEO IBD: Children under 6 years old
- Infantile IBD: Children under 2 years old
- Neonatal IBD: Children under 27 days old
- Symptoms of VEO IBD
Children with VEO IBD can have a variety of symptoms. Many of these symptoms are also linked to other health problems, so it's important to talk to your child’s pediatrician. Some symptoms include:
- Stomach pain
- Blood or mucus in their stool
- Diarrhea or severe constipation
- Vomiting frequently
- Trouble feeding (not wanting to take a bottle or breastfeed)
- Weight loss, growth failure, or not wanting to eat
- Abscess, skin tags, or fistulas near their bottom
- Fevers with no apparent cause
- Joint pain or swelling
- Red, irritated eyes or trouble with bright lights
- Skin rashes
- Sores in the mouth
- Getting sick often
- Risk Factors for VEO IBD
We don't know everything about what causes VEO IBD, but there are some things that might increase the risk:
Family History
If your child has family members with IBD or other autoimmune diseases, they might have a higher chance of getting VEO IBD. If one parent has IBD, there is a 4–8% chance that the child will also get it, and it's up to 30% if both parents have IBD.
Genetics
Some genetic disorders, like problems with certain immune system genes, have been linked to VEO IBD. These genes can affect how the body fights disease or manages inflammation.
Environment
There has been research on potential environmental factors that could play a role in the development of IBD. Studies have shown that children in certain regions like northern cities or developed countries, may be more likely to get IBD.
Microbiome
The human body has a community of tiny organisms, like bacteria and others. Many of these organisms help with digestion in the gastrointestinal tract. Research has found that an imbalance of these tiny organisms, may be linked to IBD.
Immune System
The immune system is the body’s natural defense system that fights against disease. If the immune system isn't working properly, it can cause inflammation in the body, which is a big part of IBD.
Reference
Peppercorn M, Mahadevan U. Patient Education: Inflammatory Bowel Disease and Pregnancy (Beyond the Basics). UpToDate 2023 Nov 1- How VEO IBD is Diagnosed
If doctors think a child might have VEO IBD, they will order several tests. These might include:
Blood and stool tests to check for signs of infection or inflammation. This may include a complete blood count (CBC), chemistry panel (CMP), sedimentary rate (ESR), C-reactive protein (CRP), and stool tests.
Imaging tests which might include an endoscopy, colonoscopy, ultrasound, MRI, or CT scan.
Other screenings may be done to look for other conditions such as Celiac disease, other infections, thyroid conditions, or other health problems.
Genetic testing will look for genes that might be linked to IBD. Talk to your doctor if this is an option you are considering and discuss medical insurance coverage if applicable.
- Treatment for VEO IBD
There isn't one treatment that works for everyone with IBD, but the goal is to help the child grow well, feel good, and keep the disease under control. Treatment options include:
Medications
There are different ways medicine to help control IBD can be taken, including pills, shots, or infusions. Although not all medications are specifically approved in children, talk to your child's doctor about the best options.
Surgery
If other treatments aren't working, surgery may be needed.
Stem Cell Transplants
For certain genetic disorders, a stem cell transplant might be used.
- Nutrition for Kids with VEO IBD
IBD can make it hard for kids to get the right nutrition. Doctors and dietitians might suggest the following along with other treatments for VEO IBD:
- Enteral nutrition: A nutrient-rich formula that is taken by mouth or through a feeding tube. This helps kids get the nutrients they need.
- Exclusive Enteral Nutrition (EEN): All nutrition comes from formula and regular food is not eaten.
- Partial Enteral Nutrition (PEN): Nutrition comes from a mix of formula and food where between 30–50% of the child's calories are from formula.
- Parenteral nutrition: This is used when the body can't absorb nutrients through the stomach. It is given through an IV, or tube in the vein. This tube is typically inserted into the chest, arm, or neck and nutrients are “delivered” directly into the bloodstream, bypassing the digestive system.
Sometimes, doctors will suggest a therapeutic diet. These can include:
- Exclusive enteral nutrition (EEN)
- Crohn's Disease Exclusion Diet (CDED)
- Specific Carbohydrate Diet (SCD)
The Mediterranean diet can also help in managing symptoms while keeping a healthy relationship with food. It's best to seek support from a pediatric IBD-focused registered dietitan and gastroenterologist when selecting the best nutritional options for your child.
- Enteral nutrition: A nutrient-rich formula that is taken by mouth or through a feeding tube. This helps kids get the nutrients they need.
- Daycare and School Support
It can help to talk to your child's school or daycare about VEO IBD. You might want to share the following information with them:
- An overview of IBD and your child’s health plan
- Signs your child might show if they are having symptoms
- Any limits to physical activity or special dietary needs
For school-age children, a 504 plan can help with:
- Bathroom access
- Snacks or extra nutrition during the day
- More time for homework or tests
- Excused absences for appointments or IBD flares
A sample 504 plan template is available for you to edit and begin the conversation with your child’s school.
- Helpful Links and Resources
Reference:
Krauthammer, A, Weintraub I, Shaoul R, Lev-Tzion R, Broide E, Wilschanski M, Lerner A, Yerushalmi B, Shouval D, Shamaly H, Haberman-Ziv Y, Weiss B. Infantile-Onset Inflammatory Bowel Disease has Variable Long-Term Outcomes. Front Pediatr. 2023 Mar 1;11:1097779.