Back to school with digestive disorders: Parent-school partnership key to patient support

School can be a wonderful source of social and academic connection, but for children with chronic digestive conditions and intrusive symptoms, the experience can become significantly more challenging and anxiety-provoking.

As we prepare for another school year, let’s talk through some opportunities to support educational experiences for youth with digestive disorders.

Digestive conditions are unique in that there are reciprocal interactions with school functioning. This means that how a student is feeling about their GI symptoms will directly affect their schooling, and a student’s school experience can also directly influence their GI symptoms. As such, it is imperative to consider school functioning as part of a youth’s medical care plan.

All belly aches are different

A stomachache is the most frequent reason why children will visit their pediatrician or school nurse. As such, most people who work in schools will encounter at least one child daily who complains about belly pain.

While a short break and rest in the nurse’s office may work for many students, others require a more comprehensive plan based on the specific symptoms they are experiencing during the day.

We know that children rarely make up their symptoms, so if a child complains about a stomachache, believe them. Parents should acknowledge the challenge of going to school while feeling uncomfortable and learn more about what their children are feeling. They should avoid the temptation to immediately diagnose the problem as “just nervousness for school,” as this can backfire by unintentionally belittling or dismissing the child’s physical experience.

Instead, parents should use this as an opportunity to let the child know they are listening and hearing them. Assuming the child does not have any major red flags, parents can likely take them to school and alert the school nurse or teacher about their condition.

For some children with ongoing GI symptoms, the symptoms do not just go away with a quick break or trip to the bathroom. When symptoms show up daily, school personnel become concerned about the impact on learning. This is often when medical providers get calls about students either not wanting to go to school because of GI symptoms, not being able to stay in school, or making frequent and extended trips to the bathroom or nurse’s office.

This can quickly start to become overwhelming to parents and school faculty. So, what do you do?

Create a team of support

When symptoms impair a child’s educational, social or daily functioning, it is appropriate for parents to schedule an appointment with a pediatrician or pediatric gastroenterologist who will discuss a reasonable evaluation plan based on the child’s presenting symptoms.

Regardless of the next steps in prescribed medical care – e.g., medications, dietary modifications, lifestyle changes, psychogastroenterology interventions to reduce gut sensitivity and improve functioning – students will often need additional school-based support to help them succeed. Partnering with a student’s classroom teacher, school nurse, guidance counselor or special-education services coordinator could be an excellent place to start.

Parents should inform school staff about their child’s medical condition and its effects, explain the diagnosis and treatment, and discuss expectations for school functioning. Often parents are hesitant to share details about their child’s medical condition with the school; while a desire for privacy is understandable, it is quite valuable to bring into the loop certain members of a child’s school team so they can understand the situation.

Additionally, since GI symptoms are often invisible, providing details about the diagnosis may reduce some unintentional stigma or confusion about the child’s experience.

Common triggers for children

Students who have digestive disorders are often understandably quite nervous about experiencing symptoms in school. As such, they will do all sorts of things to avoid uncomfortable sensations or remove themselves from situations that may make symptoms worse. It is important to know that these situations are stressful and worrisome to students and not “just in their head.” Children would rather not feel that way if they had the choice.

Here are some common triggers or situations that may be involved:

School bus ride: Taking the bus with a digestive disease can be quite challenging. Buses are bumpy, the trip can be long and the fear of not getting to a bathroom in time is often extreme. For many students, there may have been a time where they had a soiling accident on the bus, and this memory makes future bus rides less appealing.

Early morning wake-up: Children frequently tell us that their GI symptoms feel worse on weekday mornings; this is not just because they are trying to get out of school. We do know that overnight release of hormones, timing of meals and limited sleep make GI symptoms worse in the early morning, especially nausea, reflux and IBS. The school might accommodate a late arrival if this would allow a child to feel confident and more willing to go to school.

Food avoidance: Students who are fearful of experiencing heightened digestive sensitivities at school often avoid eating breakfast and lunch. Though this approach might seem logical, it makes the enteric nervous system even more prone to activation. Students benefit from eating throughout the day — even small snacks and portions — to help their brain relearn that normal digestive sensations are not dangerous.

School bathrooms: Many students who frequently need to use the bathroom feel uncomfortable doing so public, but this is an essential skill to master when living with a chronic digestive disease. Nevertheless, we can’t fault students for not wanting to use the bathroom at school. If this experience is standing in the way of a child being able to go to school or concentrate in class, parents should talk to the school nurse about using a private bathroom.

Academic and social challenges: Sometimes symptoms are activated during the day because of pressures of being a student. Difficulty with academic subjects, generalized learning or processing issues, and trouble with peers could “turn on” the sympathetic nervous system, activating a student’s GI sensitivities and worsening symptoms. The rigorous demands of sitting in one building and producing work all day can intersect with the enteric nervous system in uncomfortable ways and prompt impairing GI symptoms.

Sleep challenges: Poor sleep has repeatedly been shown to be one of the biggest exacerbating factors for students with digestive disorders. Adequate sleep is essential for digestive difficulties. Working on “rebooting” appropriate sleep hygiene in preparation for school is valuable for coming out of the late nights and late mornings of summer. And modeling to students that sleep is more important than studying late into the night also establishes a parent- and physician-sponsored prescription to prioritize personal health.

Stress: We know that stress undeniably plays a role in the maintenance and exacerbation of digestive conditions, even when disease activity is in remission. But stress is here to stay. For youth with chronic digestive diseases, we want to empower them to see that despite their ongoing GI symptoms, they can still connect with important things in life.

What if it doesn’t get better?

If medical symptoms continue to interfere with a student’s ability to learn in school, parents should speak with their child’s team about making accommodations or modifications to their educational plan, which may be incorporated within an individualized health plan, a Section 504 plan or an Individualized Education Plan. Though each plan is unique in how they work with a student’s educational goals, they are designed to level the playing field for students whose medical, psychological, neurodevelopmental or learning issues interfere with normative school functioning and performance.

Partnering with a mental health professional with expertise in psychogastroenterology also can help students learn ways in which they can coexist with uncomfortable internal sensations and reduce avoidance of feared situations. By doing do, they can “turn down the volume” of the sympathetic nervous system, and gradually return to sources of connection and enjoyment.

It is also important for parents to consult with a mental health professional if they become concerned about their child’s mood or observe significant changes to their daily activities, food consumption, sleeping patterns, behavior or desire to participate in regular activities. Although all these things could be related to underlying GI symptoms, they also may indicate more significant mental health concerns for which additional evaluation is warranted. We have seen a tremendous spike in youth mental health crises during the past few years and speaking with children about these issues in a curious and empathic manner is highly valuable.

Chronic digestive conditions can be extremely impairing for children. Regardless of the medical diagnosis, parents should partner with their student’s school to develop a thorough plan to support daily functioning and work with a pediatrician and gastroenterologist to identify an interdisciplinary and biopsychosocially-informed treatment plan.

For more information and tips for helping students return to school this year, please visit the Connecticut Children’s “Back to School 2022” toolkit – (https://www.connecticutchildrens.org/back-to-school-2022/) and the Rome Foundation GastroPsych Resource Center (https://theromefoundation.org/rome-gi-psych-committee/).