'Should My Kid With T1D Go Back to School?'

Jessica Sparks Lilley, MD


July 24, 2020

Our practice is fielding hundreds of calls, emails, and patient portal messages pleading for guidance. Back-to-school time is upon us, and the question on every parent's mind is whether we can safely send our children back to school. For parents of children living with type 1 diabetes (T1D), that question has an elevated sense of urgency.

Diabetes quickly emerged as a serious risk factor for severe illness or death from COVID-19, and headlines remind us of this danger repeatedly. As a pediatric subspecialist and a mother, my optimism and fear have waxed and waned, sometimes eclipsing. The earliest reports from China were reassuring for children, but the emergence of multisystem inflammatory syndrome in children (MIS-C) has been worrisome, even though the phenomenon appears to be rare.

Experts have proposed many theories for why children fare better with COVID-19: lack of other health conditions, different expression of ACE2 receptors (the point of entry for SARS-CoV-2 into the respiratory epithelium), recent exposures to other coronaviruses that cause common colds, or partial immunity because of measles-mumps-rubella vaccines. Other reassuring observations showed little spread in daycares, even in high-risk areas like New York during the initial surge; YMCA facilities that remained open to provide childcare for essential workers showed rare cases, especially among young children.

Should Kids With T1D Return to School?

That leaves the question of what to do about schools. Schools around the world have reopened with no discernible contribution to community spread. Israel had a reassuring restart for younger grades but experienced a devastating surge after reopening for middle and high schools.

Unfortunately, the United States has had the highest reported community spread in the world, so we can't cleanly extrapolate the experiences of areas that have the pandemic under better control (defined as < 1%-3% positive tests). At the time of writing this article, Arizona has 24% of its tests returning positive, while my state of Mississippi has 17.7%. It's difficult to imagine reopening schools safely with such numbers.

However, we know that students have suffered during school closure. Many of my patients with T1D have had worsened glycemic control due to lack of structure at home and absence of supervision and support during the day that is typically provided by school nurses. The mental health toll of lack of socialization and support is difficult to calculate, but calls to my office have increased for children suffering anxiety and depression. We also know that many children were asked to shelter in place in homes that are unsafe or resource-poor, and schools provide a safe haven for many.

Juggling childcare so that parents can continue to work has been stressful for almost every family I serve. While the majority of my patients receive insurance coverage through Medicaid or CHIP, others rely on private insurance supplied through their parents' jobs, so even if a parent were able to cut to part-time hours by making sacrifices elsewhere, many feel that they must continue working for insurance benefits alone.

No Guidance, No End in Sight

There is a sad dearth of guidance for children and teens living with T1D who might soon be presented with the option of attending school. Data collection from clinicians sharing their experience with patients with T1D is ongoing through the T1D Exchange, and although initial reports of COVID-19 outcomes have been encouraging, diabetic ketoacidosis is not uncommon. The American Diabetes Association offers guidance for school orders and patient rights, but many of its resources date back to March — eons ago in terms of the pandemic. The Juvenile Diabetes Research Foundation has a general information page that does not yet offer specific guidelines concerning school. Families seeking definitive answers will not find them from national organizations, as their role is not to speak for individual cases. [Editor's note: On July 23, the ADA, JDRF, and Sansum Diabetes Research Institute hosted a virtual town hall on returning to school with diabetes.]

Meanwhile, our practice is flooded with requests for help in navigating this very personal decision. We can posit that patients with well-controlled T1D aren't high-risk. We can support our patients in striving for the best possible glycemic control to help maintain a robust immune response and protect against diabetic ketoacidosis, a problem that can complicate any infection for someone living with T1D. We are able to reassure families that there have not been reported deaths of children with T1D due to COVID-19 in the United States to date, and share anecdotes of children with T1D who have done very well when they were infected.

Beyond those very general observations, we know that every family is different. Some of my patients live with grandparents, siblings who are cancer or transplant patients, or people in other high-risk groups. Some are in single-parent homes and, for the economic survival of their family, must return to school if at all possible.

With "no end in sight" to the pandemic, per Dr Anthony Fauci, parents are struggling to make the best choices for their families, and it often feels like we're grasping in the dark.

There Isn't Just One Answer

Based on what I know on a given day, with humility that this knowledge may change tomorrow, I am helping families make the best decisions for themselves. Although the evidence is reassuring that young people with T1D survive COVID-19, the long-term outcomes are still unknown, so I continue to provide evidence-based guidance for avoiding infection if possible. Masking, sanitation, and social distancing remain our best hopes for mitigation until a vaccine or proven treatment is available.

Children with T1D should not be forced into distance learning, however, as some local districts have attempted. Instead, robust distance options must be offered for all children, taking into consideration individual family dynamics.

The risk-to-benefit calculus will be different for every family. The unspoken question for many big decisions is often, "If this was your child, what would you do?" The jury is still out for the Lilley family as we face record new cases and full hospitals in the Magnolia state, especially as my mother undergoes treatment for recurrent cancer. The American pandemic response has differed from other nations', and the results of our return to school may differ as well.

Still, we can use others' experiences to guide us as we try to make the very best out of this horrible situation. There isn't just one answer. Parents of children with T1D have learned to be advocates for their child's best interest, and now more than ever, they need our guidance to make the most favorable decision for their unique situations.

Jessica Sparks Lilley, MD, is the division chief of pediatric endocrinology at the Mississippi Center for Advanced Medicine in Madison, Mississippi. She became interested in pediatric endocrinology at a young age after seeing family members live with various endocrine disorders, including type 1 diabetes, Addison disease, and growth hormone deficiency.

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