Parents like Kate Nelson and Jamie Kling find many misconceptions surrounding Type 1 diabetes. The diagnosis is always devastating, more common than you’d think and it challenges everyone involved, from the parents and children to school nurses.

Education, they said, saves lives.

Symptoms of T1 diabetes often mimic the flu, Nelson and Kling cautioned. Their 7-year-old son, Henry, is one of eight students with T1 diabetes in the Portage Community School District. A week before his diagnosis, in March, Henry had influenza. But his parents noticed he was going to the bathroom more than usual and brought him to the hospital for testing. The tests confirmed he had the disease, one that affects 1.25 million Americans including 200,000 youth.

“Symptoms can be very subtle,” said Kling, a family practice physician at Dean Clinic in Baraboo. “They could be hungry, losing weight — packing food in but not gaining (weight). Those are things to talk to your doctor about.”

Not catching the early signs of T1 diabetes can be fatal. According to the Juvenile Diabetes Research Foundation, warning signs also include extreme thirst, drowsiness, sudden vision changes and labored breathing.

“The biggest misconception,” Nelson said, “is people think it’s the same as Type 2 diabetes, brought on by poor eating, being overweight.

“It’s an autoimmune disease and has nothing to do with that.”

While T2 diabetes is the most common form of the disease — affecting more than 27 million Americans, according to the American Diabetes Association — schools more often see T1 in students. Portage elementary school nurse Valerie Hon said T1 diabetes affects 1 in 335 students in the district, which currently does not have any students diagnosed with T2. The national average for T1 diabetes is 1 in 400 to 500 children.

T1 diabetes is when the pancreas no longer makes insulin, Hon explained. The body needs insulin in order to process food into usable energy. T2 diabetes is a metabolic disorder where the pancreas might not make enough insulin or the body is unable to use what is made appropriately. T1 diabetes occurs often in children and some adults up to age 30, while T2 occurs typically in people over 40, though that’s changing.

Hon on a regular basis works with three elementary students who have T1 diabetes, and Suzanne Van Hoof works with the five middle and high school students who have the disease.

“The most important thing for folks to know,” Hon said, “is related to the working relationship between parents, school and medical providers in order to create a safe, functional plan for each student with health issues.

“The child is at the center of this relationship. The safety of the child is the center point. We must work together. And if things come up, we talk together to work through situations as they happen.”

Round-the-clock support

Erin and Philip O’Rourke of Portage learned their 4-year-old daughter, Amelia, had T1 diabetes when she was 15 months old.

Amelia was going to the bathroom a lot, had lost weight and was breathing heavy before her parents rushed her to the emergency room. When doctors determined Amelia had T1 diabetes, she was taken by ambulance to University of Wisconsin Hospital, as is protocol.

“Parents should know there’s no cure, and to know the signs,” said Erin O’Rourke. “Parents who don’t have children should know the signs too, to catch it early.”

Amelia’s blood sugar is checked several times a day. In August she was put on an insulin pump, which the family and doctors are still testing and tweaking. Amelia is tested before meals and during activities to see if she goes too high or low. “Our main worry is catching the lows at night,” O’Rourke said. “We’re still getting up at 3 a.m. to check her because our fear is she won’t wake up because she’s so low.”

Henry, now transitioning to the pump, needs a shot for every meal and before bed, Nelson said. He averages five shots a day. During school he meets with Hon two to three times a day.

“It’s 24-7,” Nelson said. “We never stop.”

“It’s a lot more complex than people think,” Nelson added. “It’s a very serious, lifelong disease and takes careful management.”

When Amelia starts school, she’ll go to Woodridge because the O’Rourkes live close by.

Nelson and Kling live in Baraboo, but they’ll soon move to Portage to get closer.

The families know each other from a support group that had been meeting once a month at St. John’s in Portage, but the group is determining a new calendar. Parents interested in learning more about local support should contact the schools.

“There are people who are there to help you along the way, which is nice to know,” O’Rourke said. “You’re not alone.”

School relationships

Each child’s needs are “unique,” Hon said, and may change at any time. Considerations are many for nurses, including the insulin administration, the medication orders for insulin changing for the carbohydrate ratio in meals or snacks, and whether a child has been ill, going through a growth sport or has had blood sugar running high or low.

School nurses need to have “very active” relationships with the families and clinicians, especially for students who’ve been recently diagnosed or are experiencing changes. The process involves an understanding of state law, a lot of paperwork, physician orders and a trained staff to assist with emergency care plans unique to each student, among other procedures.

“I feel strongly that the care of students with diabetes requires no interruptions,” Hon said. “Enough staff, of various sorts, is needed to safely complete the tasks for each student when the need arises.”

Care tasks at mealtime are just one focus for nurses. If one student needs more time than expected, Hon said, that can impact the next student located in another building.

“You cannot just walk away in the middle,” Hon said. “As student needs rise, more school nurses are needed to meet those needs. You just can’t split a nurse in half to cover tasks that happen at the exact same time.”

Insulin injections at school are recorded in communication books both for the parents and for the school’s own records, including how much insulin was used, at what time and where on the body.

“Real-time information is critical,” Hon said.

Other diseases school nurses deal with include seizure disorders, food allergies and asthma. Moreover, the general administration of any medication, Hon said, “is serious.”

‘Ask questions’

Parents of children with T1 diabetes are often met with a phrase like, “at least it’s not cancer,” Nelson said. But that’s an unfair assumption. While the family does try to “keep things in perspective,” T1 diabetes is both exhaustive and “potentially fatal.”

“It’s not as easy as counting carbs,” Nelson said. “It changes all the time, is very hard to control and depends on the day.”

“One problem we have, is people will sometimes say, ‘Oh, my grandma has diabetes so I know how to take care of it,’” Kling said.

“(But) people need to ask questions and know Type 1 is not the same as Type 2.”

“Kids are difficult. They’re going to be active and show examples of low blood sugar — they’ll look tired and confused — but after recess, most kids look tired. So it really is a difficult disease.”

“The biggest misconception is people think it’s the same as Type 2 diabetes, brought on by poor eating, being overweight. It’s an autoimmune disease and has nothing to do with that.” — Kate Nelson, parent of 7-year-old son with Type 1 diabetes