First pediatric diabetes mobile unit in country helps St. Louis-area families who are struggling

Apr. 22—WELDON SPRING — Louis Davenport left his fourth grade class at Independence Elementary on Wednesday and climbed onto a giant motorhome outside his school's front door, where he now gets his recommended doctor visits for his type 1 diabetes.

Inside, a test measuring the average amount of sugar in in his blood over the past three months — known as A1C — revealed his dropped nearly a whole percentage point since his last visit.

"Dude, what?!" Dr. Melanie Bryan beamed, holding up her hand. "High-five!"

Louis' mom, Brandy Davenport, 45, listened to the celebration on speakerphone. It was exactly what she hopes to instill in him as he gets older and more independent.

"You hear that, buddy?" she said. "It's important."

Louis, 10, proudly responded from his patient chair, "Yeah, I know."

Nearly a year ago, St. Louis Children's Hospital unveiled what it says is the nation's first pediatric diabetes mobile clinic.

Two days a week, the Healthy Kids Express Diabetes Mobile Unit travels to area schools to care for the hospital's patients with diabetes or diabetes risk.

The clinic-on-wheels is staffed by a full medical team and equipped with two patient rooms, a bathroom and all the technology and treatments needed to monitor and care for patients.

In addition to the medical staff, a dietician on the unit helps kids at risk for diabetes with individualized ways to improve their nutrition and increase their exercise.

The goal is to not only make it easier for families to make it to doctor appointments, which is critical to managing diabetes but also to help prevent children from developing type 2 diabetes, which has been on the rise.

Dr. Ana Maria Arbelaez, a Washington University endocrinologist at St. Louis Children's Hospital, said despite a half-dozen endocrinology clinics throughout the St. Louis area and significant advances in treatments, many patients miss appointments and struggle to maintain their blood sugar, especially families struggling with poverty.

"I think that more and more, it's clear that one size doesn't fit all and that we as medical providers have to be creative and innovative in how we can work with the community and patients to make sure that we're improving their health care," said Arbelaez, who serves as medical director for the mobile unit.

The mobile team works closely with school nurses, providing more than 300 with advanced training in identifying and caring for kids with diabetes for pre-diabetes. Nurses can call the team for expert advice when needed.

"I don't think many people really realize what a huge role school nurses play in the day-to-day health of children with diabetes," Arbelaez said. "It's a game-changer if they (parents) have a good school nurse that feels confident in what they're doing, has the knowledge to care for their kids and is a good partner in their care."

So far, 10 school districts have partnered with the mobile unit to serve students, and Arbelaez said she hopes for more.

The 10 are Ferguson-Florissant, Ritenour, Riverview Gardens, Jennings, Francis Howell, Fort Zumwalt, Parkway, Pattonville, Normandy and KIPP St. Louis.

Louis' elementary school was one of four schools in the Francis Howell school district the unit visited Wednesday.

During his appointment, they discussed a complex mix of topics including insurance coverage for a new type of insulin pump, how to stay safe during summer activities like swimming and coordinating visits to schools during summer break.

Louis knew he can no longer miss school like he used to, but he ended his appointment by joking into the speaker, "Oh Mom, can I come home since my A1C is good?"

Overcome barriers

Arbelaez said the idea for a mobile clinic emerged when she and her fellow endocrinologists noticed not only a rising number of young patients with diabetes but also more struggling with managing their disease.

Families were facing several financial, health and safety challenges exacerbated by the COVID-19 pandemic. Parents couldn't take off work for appointments, which are recommended every three months and sometimes more.

They lacked access to the supplies and latest technology needed to stay healthy. They struggled to keep up with how to respond to their child's rapidly changing health needs.

"Kids who miss regular diabetes follow-up appointments are more likely to have short and long-term diabetes complications," Arbelaez said. "We said, 'OK, if we could find a way that we could come to them, could we overcome these barriers?'"

The idea was made possible through donations from The Saigh Foundation, Dr. Ronald and Anne Krones, the Episcopal Presbyterian Health Trust, and Tim and Kim Oliver.

Only students who are diabetes or pre-diabetes patients at St. Louis Children's Hospital clinics can be seen on the mobile unit. Hospital officials say they see between 200 to 250 new patients with diabetes a year.

Nearly 2,600 students across Missouri reported to school nurses that they have type 1 or type 2 diabetes, according to the 2023 Missouri Diabetes Report, based on responses from school districts representing 88% of the Missouri school population.

Until recently, children and teens almost never got type 2 diabetes. But now, about one-third of American youth are overweight, a problem closely related to the increase.

In Missouri, more than 32% of children ages 6 to 17 are overweight or obese, compared with nearly 34% nationwide, according to the latest National Survey of Children's Health from 2020-21.

For reasons unknown, type 1 diabetes among children has also seen upticks.

Type 1 diabetes is an autoimmune disease where the body's immune system attacks cells in the pancreas that make insulin, which is necessary to regulate blood glucose (sugar). It is usually diagnosed in children and young adults and requires insulin injections daily and with food.

Type 2 diabetes is the most common type of diabetes, where cells don't respond normally to insulin. Type 2 can develop at any age. Risk factors include excess weight, lack of exercise and a family history of diabetes. Medications and lifestyle modifications can help manage the disease.

Pre-diabetes is a condition where blood glucose levels are higher than normal but not yet too high. With no clear symptoms, many don't know they have it. Diabetes can still be prevented or delayed by lifestyle changes.

Having consistently high blood glucose can cause serious health problems, such as heart disease, nerve damage and vision loss.

Ashley Mosley, 37, of Jennings, said since her 13-year-old son Elijah was diagnosed with type 1 diabetes three years ago, it has been a whirlwind of learning how to monitor his blood sugar, count carbohydrates and dealing with typical kid behaviors like sneaking snacks.

After months of Elijah losing too much weight, he is now growing. But that, along with hormone changes, means more fluctuations in his blood sugar.

They have also struggled with a faulty insulin pump, which led to Elijah needing to be hospitalized last fall.

The team on the mobile unit has provided troubleshooting strategies and is helping with getting a new pump, Mosley said.

"Sometimes, when the parent calls in to the insurance company, they get the runaround," she said. "But usually when the doctor steps in, you know, things happen."

Having the mobile unit come to Elijah's school has also been a huge relief as a single mom of three, Mosely said. She works in the health care field, and with a shortage of staff, getting time off work is challenging.

"You know, you hate to choose between caring for your child and trying to bring home a decent paycheck with a livable wage," she said. "I am just so thankful for the van because it makes it possible for me to still be able to take care of my children and for him to be able to get that quality care that he needs for his condition."

1st sleepover

Jonathan Speak, a school nurse at Ritenour High School, said he sees many students who need extra help and guidance with their diabetic care. Some have a hard time ordering supplies like glucose meters, test strips or insulin.

The mobile unit team has been helpful in helping students, and the convenience has been key, Speak said.

"It's all done on a mobile van right in front of the school building during a school day," he said. "That's hugely helpful for a lot of our students whose parents both might work one or two jobs and have trouble just getting them to the doctor on a regular basis."

The school nurses also instantly have the student's latest updates in care instead of having to call doctors' offices and be put on hold, Speak said.

"As soon as our students who are seen on that van are done with their appointment, they come off that van with new doctor's orders printed out to hand to the nurse so we have the documentation that we need," he said. "It's all to the nurses' hands and in our computer system the same day."

The mobile unit spends Wednesdays and Thursdays traveling to different school districts, ensuring each patient is seen every three months.

Arbelaez said sometimes the team will see students who haven't had insulin in days. Some may be sick from ketones, a chemical byproduct of the body breaking down fat for energy when there is not enough glucose. Too much can poison the body.

Staff is able to initiate therapies on the unit and screen for complications. But just as important as treating the setbacks, Arbelaez said, is celebrating the accomplishments.

When students lower their A1C levels or weight, they celebrate by getting to add their initials to the "wall of fame" on the bus. The team will blow noisemakers or maybe even do a dance.

"It's really fun to empower them, for them to see that they can do this," Arbelaez said. "They understand that this is important, that it's like getting straight A's at school."

Davenport, Louis' mom, said Louis has been doing so well that he recently had his first sleepover at a friend's house — a big deal for them both.

As he grows older, Davenport knows there will be more sleepovers and time away from Mom and Dad. Louis will be staying up later, snacking more and starting puberty — all of which will change his insulin needs.

So while she attended his first appointment with him on the mobile unit, she let him go solo on the past two.

Davenport said while she appreciates the opportunity to stay home and focus on her work, she also hopes it will help him appreciate his own ability to stay healthy.

"He can take ownership way earlier than he would if I was taking him to appointments," she said.

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