A diagnosis of IBD in childhood can come with a tremendous amount of considerations – it’s extremely understandable to be overwhelmed at first! Know that there are resources available to support you, your child, and your family and community as you adjust to this diagnosis. This guide goes over many of the main considerations when you have a child with IBD. 

Right After Diagnosis 

Understanding IBD 

One of the first steps after your child receives a diagnosis of IBD is to help make sure they understand the diagnosis. It can be helpful to talk through what IBD is, what treatments may look like, and who they will be working with on their treatment team. This page can be a helpful one to read through with your child, or may help you think through what topics you might want to discuss with your child. 

There are also sites for kids and teens to get involved themselves by doing self-directed learning and to learn some more about youth-specific resources!  

Starting a medical regimen 

After your child has awareness of what their medical regimen may look like, there may be some practicalities to consider when starting. 

Pill swallowing 

Many children with IBD may need to swallow pills as a part of their treatment, and some children may have difficulties swallowing pills. Some strategies to try if your child is having difficulty pill swallowing include: 

• Starting to practice swallowing with something small and appealing, like candy! Start small (sprinkles, mini M&Ms) building up to swallowing larger and larger items. 
• Experiment with head tilt! Sometimes children have an easier time swallowing when they are looking straight ahead, and some have an easier time when their head is tilted back. 
• Check out this pill swallowing Fact Sheet for more! 

Needle work 

Children with IBD will likely be faced with a needle (e.g., for blood draws, for infusions) at least once over the course of their treatment, if not many times. If you have a child who is hesitant about needles or has a needle phobia, you will want to plan in advance.  

Here are some strategies to help your child feel more in comfortable and control of the situation.  

• While saying that it won’t hurt is not helpful, using words like “pinch” or “poke” rather than “pain” and “shot” may help. You also may want to emphasize the reason for the needle – it is to help keep you healthy! 
• Let the child know you understand why they feel scared, and that you are going to help them make a plan. Does that plan involve having a phone with them to watch a show? Does it involve getting a treat afterward? Can you set up a plan for deep breaths? Strategies such as controlled deep breathing and distraction can be particularly helpful! 
• When creating a plan, it’s important to give your child options so they can feel a sense of agency! However, not getting the blood draw/infusion should never be an option on the table. 
• In addition, if you know your child will struggle with needles, don’t hesitate to let the medical team know! Let them know what typically happens, and (if you have created one), what plan you have in place. That can help everyone be on board with a plan to best support your child. 

Long infusion times 

For children who receive infusions, they often last around two hours. Similar to planning for needle work, speaking with your child to discuss a plan (are they going to bring a book? Homework? A game?) to help support them in advance. Again, giving your child a sense of agency and choice over their plan can be very helpful! 

Setting up school supports 

Your child may need certain supports in school as a result of their IBD diagnosis. Most commonly, this takes the form of a 504 plan, which is a supportive plan for students with disabilities, including chronic illnesses like IBD. Any school that receives federal funding are required by law to offer these supports and provisions so that students with disabilities may have equal access to participation in school. 504 plans can include supports like: 

• Preferential seating near the door for ease of access to the bathroom 
• Unlimited bathroom breaks 
• Opportunity for extra time on tests or assignments 
• Opportunity for flexibility with make-up work if school is missed due to a medical appointment or procedure 

Check out this excellent fact sheet to learn more! To help with writing or crafting your child’s 504 plan, this template may help. 

Emotional and Mental Health 

Adjusting to a diagnosis of IBD in childhood can be a source of stress, and can take a toll on your child’s emotional and mental health. In fact, studies have shown that children with IBD are more likely to have symptoms of anxiety and depression. 

In addition, research has shown that in pediatric IBD physical and psychological well-being are related, with a particular relationship between psychological distress and symptom severity. Given the known connections between mental and physical health, if you sense your child is feeling down, stress, and/or anxious it can be really helpful to work on some coping techniques! Here are some to try: 

Create opportunities for joy 

While seemingly intuitive, engaging in pleasurable activities can cause a substantial change or lift in mood! Try to schedule activities that bring your child joy – family time to watch a favorite movie, a play date with a friend, even an after-school activity like lessons, sports practice, etc.! 

Have a routine 

Predictability can be extremely helpful for boosting and maintaining mental health! Things like set bed and wake times and set morning and evening routines can be very supportive, particularly for younger children. 

Practice relaxation 

One strategy that can be particularly helpful if your child is experiencing stress is called diaphragmatic breathing, or belly breathing. Diaphragmatic breathing activates your body’s “rest and digest” system and can help reduce stress and anxiety. 

• To learn and practice, check out this guided video! 
• For young children, check out this video or this one to help them get involved! 

The importance of social support 

This can take many forms! If your child is comfortable sharing their diagnosis with friends and family, speaking to others about their experiences can be a great form of social support. In addition, and especially for children who may be more hesitant to share with family and friends, there are lots of IBD-specific support groups for youth. These spaces can be particularly beneficial to gain and offer advice and share triumphs and struggles with those who have had a similar experience. To search for support groups, look here! 

Participate in the IBD community 

In addition to support groups, there are opportunities for advocacy, summer camps, and much more to help children gain a sense of belonging within the IBD community – check it out! 

Most importantly, never hesitate to reach out for professional mental health support. You can discuss options with your Care Team on ways that might be best to reach out to a professional mental health provider. This page also offers great resources on types of professional mental health treatment and offers support on when seeking professional support may be warranted. 

Lastly, while much of the focus on mental health in pediatric IBD is on reducing challenging symptoms like anxiety, stress, and depression, research has also begun examining resilience in pediatric IBD – examining how youth with IBD achieve good, positive outcomes. This is a newer area of research which hopefully will continue to grow! 

Diet and Nutrition 

Food and eating can sometimes be a source of stress or anxiety with children (and parents!) during the best of times, and potentially even more so when your child has IBD. Because IBD may affect how the intestines absorb nutrients from food, maintaining proper nutrition for healthy growth is very important. 

When your child’s IBD is in remission (or your child is having limited symptoms), focus on providing a well-balanced diet with fruits, vegetables, whole grains, healthy fats, and proteins. Limit highly processed snack foods that are high in refined grains and added sugars. Not only do these not provide adequate nutrition, but they are associated with an increased risk of IBD flares. 

When your child is having an IBD flare, you may need to adjust their diet to help reduce symptoms and stress on the GI tract. Common strategies include: 

• Eating small, frequent meals 
• Limiting common trigger foods such as lactose-containing dairy, greasy or high fat foods, high sugar foods (juice, soda, candy), and caffeine 
• Limiting high-fiber difficult-to-digest foods such as whole nuts/seeds, raw vegetables, leafy green vegetables, and popcorn 
• Increasing foods higher in soluble fiber such as oatmeal, bananas, or applesauce 
• Sticking with cooked fruits and vegetables, smooth forms of nut or seed butter, and blend fruits and vegetables as needed for easier digestion 

If your child is having difficulty eating or has a poor appetite, you can use children’s nutritional shakes to supplement their diets. If there is weight loss, poor appetite, or growth not as expected, it’s also important to include a dietitian on your child’s care team. They will be able to help you navigate not only nutrition in IBD, but pediatric nutrition as well.  

For more information, resources, and ideas on diet and nutrition, check out this site! 

Talking to Friends and Family 

The short answer is your information about your IBD (or your child’s IBD) is yours to disclose when and how you wish! However, you may want to consider telling support people who might be able to offer assistance including: 

• Teachers and school staff, to help create a supportive and appropriate learning environment 
• Family and friends, to help your child feel understood and safe in any situation 

Remember, you are allowed to give different people different information! Some people you may want to have more information, some people you may want to have less. 

If developmentally appropriate, you can talk to your child about who they might want to tell, when, and how. It can help to think through some common questions people may ask (“is it contagious?” “how will things be different for you?”) so that you/your child can have a plan on how to answer! You also might want to prepare some talking points for how IBD will affect everyday life, and what support (physical, logistical, and/or emotional) they/you may need from the person they/you are telling. 

Final Thoughts 

While having a child with IBD can be an overwhelming experience, know that there are always resources available for support! If you are looking for more, this guide is specifically made for parents and caregivers and covers many things in this post plus even more! And never hesitate to reach out to a member of your Care Team to learn more about any of the above.