When Isabella Dickey, 5, got on the bus at the end of one school day in September, her blood sugar level was 200 mg/dl and rising.
By the time her mother, Yolanda, was able to get to Stafford County from Washington, D.C., to pick her up at after-school care, the kindergartner’s blood sugar level was nearing 600 mg/dl.
According to the American Diabetes Association, a blood sugar reading greater than 240 mg/dl could detect the presence of ketones, chemicals that are released when the body doesn’t have enough insulin to burn glucose for energy and starts to burn fat instead.
High levels of ketones can poison the body, possibly causing coma or death.
The pump that delivers insulin to Isabella—who has Type 1 diabetes, in which the pancreas produces little or no insulin—became detached during the school day.
“I got a call at work from the school nurse saying there’s an error message that says to reinsert the pump,” Yolanda Dickey said.
But the nurse told Dickey she wasn’t allowed to reinsert the pump.
By 10 p.m., when Isabella went to bed, her blood glucose level was still high, just under 500 mg/dl.
Frustrated and upset, Dickey typed out an email to Stafford School Board members.
“I’m upset that they just put her on the bus with a failed insulin pump,” Dickey said. “I wrote out a timeline of what happened and what I’d like to see happen instead. I wanted to find out what policies and procedures are in place for this kind of thing.”
Last year, the National Institutes of Health reported that 208,000 children and youth ages 20 and younger in the U.S. have Type 1 or 2 diabetes.
It occurs in one in 400 to 600 children, but rates of new diagnosed cases are on the rise. A study conducted by NIH and the Centers for Disease Control and Prevention found that rates of new diagnosed cases of Type 1 in youth increased by 1.8 percent each year between 2002 and 2012.
A group of Stafford parents of school-aged children with diabetes are advocating for improved collaboration and communication with school nurses and staff charged with caring for the children during the day.
Parents spoke before the Stafford School Board in November.
Isabella Dickey was diagnosed with Type 1 diabetes at age 3. Her parents noticed that she was wetting the bed frequently.
“She was drinking so much water,” Yolanda Dickey said. “She’d say things like, ‘My eyes hurt, can I drink water?’”
Dickey took Isabella to the pediatrician, who tested her urine for the presence of ketones. Then she took her daughter to Target while they waited for the test results.
“Before we even got to the store, they called and said, ‘You have to come back,’” Dickey said. “And when we got back, the doctor was on the phone with Children’s Hospital.”
Isabella’s ketone and blood sugar levels were excessively high. She spent three days in the hospital, where she received an official diagnosis and her parents got training on how to manage the condition.
“It was really overwhelming,” Dickey said. “We left with one bag full of medicine and one bag full of books.”
At first, Isabella was getting five shots of insulin a day, after each meal and snack, and countless daily finger pricks to check her blood sugar levels.
Dickey took six weeks off work to take care of Isabella while staff at her daycare got trained on how to manage her diabetes.
“The idea of letting someone else take care of her was very scary,” Dickey said.
She said the staff at the day care “really stepped up to the plate” but it still took them years before they got the hang of calculating the amount of insulin Isabella should get in each shot.
The Dickeys, who both work in Northern Virginia, figured that managing Isabella’s diabetes would be easier once she started kindergarten, because there would be a registered nurse on site.
They wanted to make things as simple as possible, so they started Isabella on an insulin pump and a continuous glucose monitoring system this summer.
The monitoring system uses a sensor to measure Isabella’s blood sugar levels throughout the day and displays them in an app the Dickeys can see on their smartphones. The insulin pump is linked to the monitoring system and delivers insulin in amounts based on glucose readings and carbohydrate intake.
The Dickeys paid close to $600 for the pump before their health insurance kicked in. They paid close to $300 for other supplies and there are recurring costs for alchohol pads, adhesive tape and adhesive remover, the emergency medication glucagon, backup insulin pens, needles and batteries.
Dickey said she reached out to the elementary school twice before the academic year started to let them know about Isabella’s condition. She learned Isabella would be one of only two children with diabetes in a school of about 960 students.
Dickey said she spent “all summer” going to medical appointments to get the appropriate forms for Isabella’s Diabetes Medical Management Plan, written by her doctor, and her 504 plan, which outlines the parental and school responsibilities for her care.
The Dickeys had a meeting with school administration before school started to discuss the 504 plan, but they didn’t know what questions to ask and left with concerns.
“The first meeting was not good and it got cut short,” Dickey said. “I didn’t feel comfortable having her start school on the first day.”
She said she did not receive a satisfactory answer on what would happen if her daughter were to have an episode of low blood sugar on the school bus.
“Previous students [at the school] with diabetes had been dropped off and picked up by their parents, so it wasn’t an issue,” Dickey said. “But that’s not an option for us.”
Dickey said the school nurse did eventually educate the bus driver on what to do for a child with low blood sugar. But some other concerns were not resolved and new problems kept popping up.
One day, Isabella’s father went to pick her up and the nurse told him the Isabella’s pump had been beeping all day long because the batteries were low. He told her Isabella had extra batteries with her and that it was very simple to change them, just like putting new batteries in a remote control.
“She told me, ‘I know, I’m just not allowed to change batteries in an insulin pump,’ “ Frankco Dickey said.
Since then, the Dickeys have tried to put a fresh battery in the pump every single day to avoid any possibility of one dying.
Each night, the Dickeys send an email to the nurse telling her what Isabella will bring for lunch the next day and how many total carbohydrates the lunch includes. Every day after lunch, Isabella stops by the nurse’s office so the nurse can see what she ate and total how many carbs she actually got.
Then, according to Isabella’s 504 plan, the nurse is supposed to call Isabella’s mother, who can see via a smartphone app how her daughter’s blood sugar levels have been rising and falling throughout the day. Yolanda uses that information and the information about how many carbs her daughter ate at lunch to tell the nurse what numbers to input so the pump can give Isabella the right amount of insulin.
But the Dickeys said they often weren’t getting that phone call, so they worried that Isabella wasn’t always getting the correct amount of insulin to maintain healthy blood sugar levels.
This problem was solved by the school nurse contacting the IT department and getting an iPad set up with the same app Yolanda Dickey uses to monitor her daughter’s glucose levels.
But then, there was the incident of Isabella’s pump coming out.
The Dickeys like the nurse at Isabella’s school very much and called her “awesome.” They said they know she and school staff want to provide the best care they can. But they are frustrated with what they see as a discrepancy between school policies on caring for students with diabetes and what Virginia law has authorized school employees to do.
Legislation enacted by the General Assembly in 2017 “authorizes, but does not require” school nurses or nurse aides “who have been trained in the administration of insulin, including the use and insertion of pumps” to assist a student with the insertion or reinsertion of an insulin pump and the administration of glucagon, “provided that assistance has been authorized by the prescriber and consented to by the student’s parent.”
The law states that these school employees will not be liable for any damages. It also permits local school boards to allow students to carry their diabetic self-care supplies, including pumps and tools for checking blood glucose levels, with them at school and on the school bus.
But the Dickeys said Isabella’s school told them she would not be allowed to carry her supplies and that they could not assist with reinserting the pump.
Yolanda Dickey said she thinks school nurses need updated training on the new devices available for treating diabetes, such as the pumps and continuous glucose monitoring.
“They are trained to give shots and that’s it,” she said.
“I want to advocate for parents like me who work and can’t miss work to manage their child’s diabetes at school,” she continued.
Jennifer Natividad is the mother of a freshman in the Commonwealth Governor’s School at a Stafford High School. In an email sent to Stafford School Board members prior to speaking at a recent board meeting, Natividad asked for an awareness campaign for teachers on the symptoms of Type 1 diabetes, as undiagnosed diabetes can be fatal.
She also wrote that she and her husband moved their daughter, who was diagnosed at age 7, to a private school after “sometimes daily” mistakes were made in caring for her diabetes at her public Stafford elementary school.
They decided to try public school again for their daughter’s high school years. Natividad wrote that she was “met with resistance” when she registered her daughter for school this summer.
“I voiced concern over not being given the proper paperwork, being asked to have unnecessary medical procedures, and not being given informed consent on medical releases, and most concerning was a very dangerous situation with the nursing director where she threatened and refused to have her staff give my daughter her emergency medication [glucagon],” Natividad wrote.
“I want to be clear that by writing to you and coming before you we have everything to gain,” she continued in her email. “The purpose is not to seek reprimand to any one employee, but to see that there is training, understanding, and knowledge to guide our children to safe passage in their public school education.”
Colette Hokana, administrator of health services for Stafford County Public Schools, said in an email that the division’s goal is to “promote student health, safety and well-being on a daily basis through clinic services.”
“Our nurses are trained annually on diabetes management,” Hokana wrote.
She said the school nurses follow the diabetes medical management plans which “include the administration of insulin and glucagon, and the adjustment of insulin pumps and other equipment.”
Hokana said that parents provide the school with the equipment necessary for the care of their child and the nurse accesses the equipment to monitor blood sugar level.
“The parents maintain all diabetes management devices at home,” she wrote. “At this time SCPS does not provide routine maintenance of diabetes management devices.”
“SCPS recently held a stakeholders meeting to discuss and review local practices regarding diabetes care,” Hokana continued. “The group was comprised of school nurses from elementary, middle and high schools as well as parents of students with diabetes from each level. The group will reconvene in the spring to make recommendations on any potential changes to current practices and discuss ways of increasing awareness of diabetes care in the school community.”