Living with type 1 diabetes: Cases rise, causes unclear

At first glance Lily Cooper seems like the quintessential 6-year-old.

She loves the movie “Frozen,” especially the boisterous snowman Olaf. Pink is her favorite color and the more sparkles on her clothes, the better. She loves to swim and flip during gymnastic class.

But there are a few things that set her apart from the norm. She practices her addition skills by counting the carbohydrates in her lunch. It’s not a frivolous task; counting carbs is crucial to her survival.

Lily, a type 1 diabetic, has to monitor her carb intake because it could distress her blood sugar levels. If those levels are either too high or low, her body could go into shock and she could pass out – or worse.

“It’s always in the back of your head what can happen,” her mom Wendy Martino said during Lily’s three-month wellness check at Nemours/Alfred I. duPont Hospital for Children last Wednesday. “If she doesn’t have insulin, she could die.”

Type 1 diabetes is not the diabetes we hear most about – only about 5 percent of people living with diabetes have type 1. But officials say incidence rates on are the rise, especially in younger kids, and scientists are trying to figure out why.

Type 1 diabetes does not occur as a result of obesity. It’s a chronic autoimmune condition that causes the pancreas to yield little or no insulin, the hormone needed to break down glucose (sugar) to produce energy. The disease is primarily diagnosed in children.

When Lily’s nurse Kimberley Shoe first began working with Nemours as an endocrine advanced practice nurse in 2004, about 90 kids per year were diagnosed with type 1. But for the past five years, that number jumped to about 120 to 130 new diagnoses a year. Many of those kids haven’t even reached the age of 5.

Similar diagnosis rates are happening nationally. A study in a recent Journal of the American Medical Association found there was a 21 percent increase in type 1 cases across the country from 2001-09.

So far this year, Nemours has diagnosed 103 cases.

“We still have to get through the rest of November,” Shoe said.

Mystery disease

It only takes a simple urine test to diagnosis type 1 diabetes, but its root causes are unknown.

Type 1 diabetes can be genetic, but also can be triggered by a combination of environmental factors such as a viruses and infections. The viruses can cause the immune system to become extremely suppressed and confused.

“It can cause the immune system to fight against the cells in the pancreas,” explained Shoe.

There’s not enough clear evidence to explain the increase of type 1 diabetes, added Dr. Michael Rickels, an associate professor with the Perelman School of Medicine at the University of Pennsylvania. It could be due to the vast increases in viruses and bugs children are exposed to, or perhaps physicians are picking up symptoms earlier.

“Reasons for that are still unknown, but there’s also been an increase across the board in allergens and autoimmune disorders in children. That’s where other components of the environment have been investigated,” Rickels said.

A type 1 diabetic’s immune response destroys insulin-producing beta cells in the pancreas, similar to how the immune system fights off viruses. Characteristic symptoms of type 1 are extreme thirst, excess urination, irritability, hunger and vomiting, all of which could be mistaken as a typical stomach bug.

“That leads to speculation and some evidence to support that viruses, in particular enteroviruses, may directly affect the beta cell. Or that in the recovery from an infection somehow the immune system that has responded to a virus mistakes an innocent beta cell like a virally infected cell,” he said.

However, Rickels quickly quelled any fears parents might have about enterovirus 68, a new respiratory infection that sickened children across the country earlier this year. There’s been no evidence that EV-68 should create a heightened cause for concern.

Rickels said scientists hypothesize type 1 could have a causal link to breast-feeding, childhood nutrition and the introduction of infant formula. But for right now, that is just speculation. It’s possible hand-foot-and-mouth disease, strep throat, the flu and other respiratory illnesses could trigger it.

Researchers are just in the beginning stage at looking into what environmental factors could cause the body to turn on its pancreas.

Additional questions arise with demographics. Though Caucasian children are more likely to be diagnosed with type 1 diabetes, there is not enough demographic or socioeconomic research explaining why.

The time children are diagnosed also presents a challenge to figuring out the root cause of the disease, Rickels said. A nasty infection could trigger type 1 diabetes, but symptoms might not show until months or years after the fact.

Lily was diagnosed with type 1 diabetes at 15 months, but Martino said she began noticing changes in her daughter at 8 months. At first Lily slept soundly at night and ate regularly, but when she reached 8 months, she couldn‘t stop screaming and constantly exhausted herself.

“We just couldn’t understand. I don’t know if something was happening in her body,” Martino said.

Doctors originally misdiagnosed Lily with swine flu since her symptoms were vomiting, bed-wetting and extreme thirst, just at the height of the swine flu epidemic in 2009. But when Lily kept being sick, Martino rushed her to the ER.

There Martino was told her daughter was going through diabetic ketoacidosis, a serious complication that occurs when the body is unable to produce enough insulin.

If she had waited another 18 hours to get medical attention, Lily might not have made it.

“I felt like a complete train wreck. It was the most stressful, scariest thing ever,” Martino said.

Manage type 1 and still eat Pop-Tarts

The main focus for parents of type 1 diabetics like Martino is giving their children a normal childhood.

“In my eyes she can do anything she wants. There’s no limitations,” Martino said.

Lily practices gymnastics and loves buttered macaroni and bacon pizza. Before her appointment Wednesday, she had a Pop-Tart for breakfast. She can have those foods, but she just has to be careful.

“First she’s a child, then she’s a diabetic,” Martino said. “She can have whatever she wants to eat as long as she’s had the proper carbs.”

Martino and Shoe, Lily’s nurse, taught her how to count carbs and measure insulin doses, but her insulin pump does the rest. The insulin pump Lily wears on her thigh filters insulin through a tiny needle into her body.

It’s imperative to check blood sugar and carb load not only with each meal, but in the morning when Lily wakes up and throughout the night. Mom checks her blood sugar count every three hours at night.

Those evening checks are the scariest time for Martino, since 75 percent of all severe low blood sugar episodes occur at night.

A new technology might help ease that stress, Shoe said. Wireless monitors sync to insulin pumps so family members can monitor a child’s blood sugar levels even when they’re not in the room.

Shoe is intimately familiar with the insulin equipment since she, too, lives with type 1 diabetes.

Shoe, 34, was diagnosed with type 1 in 1986 when she was 5. Her diet was strictly monitored and she had to take shots of insulin instead of using a pump.

“We were not allowing ourselves to eat what we wanted. It was very hard with the peaks and rises of long acting insulin,” she said.

Today, the philosophy for treating type 1 diabetic children has changed. Medical professionals work to teach kids how to manage the disease rather than focus only on food.

After a child is diagnosed at Nemours, their families go through a two- or three-day crash course in management techniques. They teach the children to count carbs and really read serving sizes. The kids don’t have to limit themselves. They just need to learn to be aware of how their body reacts to exercise or different foods.

“If you are going to have a big spaghetti dinner, count the carbs,” Shoe said. “Exercise is great. It helps to keep blood sugars a bit lower.”

Shoe is a marathon runner. She runs when the birds wake up – sometimes at 4:30 a.m. before her shift at Nemours. She packs a snack in case she feels her blood sugar drop too low and keeps her glucose monitor in her sports bra.

“I can be out there running and reduce my insulin and do what needs to be done,” she said.

She wants the kids she treats to be kids as long as they can. But it takes time and dedication from the child’s family to get into the rhythm of diabetes management. And she urges each family member to get there in their own way.

“There’s no driver’s ed class,” Shoe said.

Jen Rini can be reached at (302) 324-2386 or jrini@delawareonline.com. Follow @JenRini on Twitter.