At Johns Hopkins Children’s Center, the Pediatric Diabetes Clinic is busy getting families and kids with diabetes ready for a new school year – or their first school year. “It’s a hectic time,” says Loretta Clark, a diabetes nurse educator in the Division of Pediatric Endocrinology, which cares for more than 400 children.
Preschoolers and early-elementary-age children with Type 1 diabetes present unique challenges for parents and schools alike. And their numbers are growing.
A disorder of the human immune system, Type 1 diabetes restricts the body’s ability to produce insulin, essential to converting sugar from food into nutrients for cells. Excess sugar builds up in the blood stream. Type 1 usually strikes suddenly in childhood and is lifelong.
While the disorder can be controlled with insulin, such management requires vigilance and a strict regimen of care. The Pediatric Diabetes Clinic at Hopkins Children’s Center provides extensive training for parents when their child is newly diagnosed, and throughout the following months and years. Now, with a newly published report in the National Association of School Nurses’ School Nurse, Clark, fellow Johns Hopkins pediatric nurse educator Kimber-Lee Abel and NASN nurse educator Sarah Butler offer guidance to school nurses and others for managing the complex care that the youngest patients need while they are in school and away from home.
The good news is that modern technology and new clinical strategies allow today’s youngsters with Type 1 diabetes to lead increasingly healthy lives, says Clark: “The ability to have tighter control, with things like glucose sensors, didn’t exist years ago.”
Along with the good, she adds, comes a steep learning curve for the parent, child and now the school, as well. Until these children are older and better able to manage their own care and technology, such as pumps, they need observant adults at school, trained in delivering appropriate developmental or medical intervention.
Parents are on the front lines of this education, Clark adds: “They have to educate the school bus driver, teachers and even other parents. There is a lot involved in keeping these kids healthy. They can require about four injections a day, blood glucose checks eight times a day and monitoring of everything they eat, to count carbohydrates. Many young children use insulin pump therapy, which requires monitoring, too.
“Parents call us, asking for help in advocating for their children’s diabetes needs during the school day,” says Abel. “They find it a pretty hard row to handle alone.”
In their report, “The Unique Needs of the Preschool and early Elementary School-Age Child with Type 1 Diabetes,” published online July 26, 2013, Clark, Abel and Butler begin by pointing out that not only is it critical for school nurses to be prepared to deliver age-appropriate diabetes care for the child’s immediate safety, “national standards of care for diabetes management indicate that school nurses are responsible for coordinating and overseeing the medical management and safety of students with Type 1 diabetes during school hours.”
Management includes developing a student’s individualized health care plan and emergency care plan, together with the student, family and health care provider. Parents should initiate the meeting with the school nurse to review a child’s existing plan. The nurse needs to be prepared to administer insulin and monitor blood glucose levels. Clark, Abel and Butler point out that preschool and early elementary school-age children lack the fine motor control and cognitive development required to be independent with diabetes care tasks. “The discussion with the family should include what tasks the student can perform independently, how information will be communicated between school health staff and parents/guardians, and child-specific symptoms of hyper- and hypoglycemia,” they say.
Because young children may often fail to detect their hypoglycemia episodes, they must be monitored for symptoms, such as sleepiness, hunger, agitation, crying or other behavioral outbursts, all signs that blood sugar levels may be dangerously low. With diabetes, the recognition and prompt treatment of hypoglycemia is as important as insulin administration.
The diabetes nurse educators call for specific diabetes management training and education for school nurses, adding that all school staff should have level one training; staff who will work with the child during the day, including the classroom teacher, need additional, level two, training.
An organized plan of care is essential, they say in conclusion: “Children thrive when there is a trusting relationship between the family, health care provider, school nurse and school staff, and a coordinated effort to achieve common goals.”
The Pediatric Epilepsy Clinic at Hopkins Children’s Center is located the David M. Rubenstein Child Health Building on Wolfe Street. There, patients and family are cared for by specialists in the Division of Pediatric Endocrinology at Johns Hopkins.
Read the full report and its guidelines for school nurses
Providing a Safe Harbor for Children with Diabetes
Diabetes and Training Research Center