A calculated life: for parents, managing juvenile diabetes calls for attention to details

By Vicki Prichard
NKyTribune contributor

Everyday, from dawn to dusk, Stephanie Vorhees runs calculations that have the power to calm or fear. Such is the brow-furrowing impact of the math that defines her days.

Last October, Stephanie’s youngest son Caleb, who is now 13-years-old, was diagnosed with Type 1 Diabetes, commonly referred to as Juvenile Diabetes. To her surprise, it meant much more than medication and monitoring his sugar consumption. She wants to make sure others realize the scope of the disease and its impact.

The Vorhees family, Stephanie, Chris (front seat), Christopher and Caleb. The family’s life changed dramatically after Caleb was diagnosed with Type 1 Diabetes. (Photos provided, except where noted)

On September 12, walkers and runners take their mark for the JDRF One Walk Newport at Newport Festival Park on the Levee. Vorhees will be one of many hoping that the event brings attention and much needed dollars to support research to improve treatments for the disease and, someday, a cure.

“Raising awareness and making people want to be involved in helping find a cure is so very hard to do,” says Vorhees, of Newport. “Unless a person has a vested interest, most don’t even understand the disease. I know I didn’t. Not even when he was first being diagnosed. I thought the doc would send us home with a glucose monitor and some prescriptions and he’d take a specific dose once or twice a day, and that would be it. It’s not even close.”

While a perfectly managed Type 1 diabetic can live a full life, many have their lives cut short because, as Vorhees says, it’s a disease that doesn’t take a break.

“Managing the disease requires no room for human error of any kind, and we’re only reacting to each moment,” says Vorhees

Alerted by what she knew were common signs of diabetes – frequent urination and thirst – Vorhees’s maternal antennae was up. She planned to monitor Caleb for a while and began keeping a record to share with Caleb’s doctor at his annual physical exam, which was just a week away. She had no idea that she was on the precipice of an emergency.

During a weekend outing at the zoo Vorhees watched as Caleb paid regular visits to the bathroom and was constantly thirsty. By the end of the zoo visit, he was feeling dizzy. She scheduled a doctor visit the next day where they learned that they were dealing with “a situation.”

Caleb tested positive for large ketones, substances that are made when the body breaks down fat for energy. This meant he was at risk of diabetic ketone acidosis, a complication which occurs when the body doesn’t receive the insulin it needs and sugar builds up in the blood system, attacking the body.

The result can be fatal. She and her husband Chris were told to take Caleb to the emergency room where they confirmed he had Type 1 Diabetes.

Old disease, new hope and debunking misconceptions
T1D is an autoimmune disease in which the body attacks beta cells in the pancreas and prevents it from producing insulin, the hormone that converts food’s sugar and starches into energy needed throughout the body.

A popular assumption is that those living with T1D can simply eat less sugar and make the diabetes go away, but because it is an autoimmune disease there is no cure, and no way to prevent it. Vorhees says it’s an assumption she’s heard before.

“People will sometimes say, ‘Well, if it’s a matter of just the carbs, can’t you just cut out the carbs and he’ll be fine?’ but you can’t, you have to have insulin,” she says.

The Continuous Glucose Monitor (CGM), used by Caleb Vorhees ‘talks’ to the app on his mother’s phone.

Continuous Glucose Monitor (CGM), which ‘talks’ to the app on Stephanie’s phone

Individuals diagnosed with T1D must inject themselves with insulin, which enables the glucose to reach the organs, instead of building up in the blood.

Once diagnosed, a patient with Type 1 diabetes is referred to an endocrinologist who specializes in hormone-related imbalances and diseases. Both patient and family are taught how to count carbohydrates and calculate insulin dosages to successfully manage the disease.

Before insulin came on the horizon in 1932, children diagnosed with Type 1 generally lived about a year after diagnosis. Advances in early diagnosis and treatment mean children with T1D can live long, normal lives.

Kenna Goodrich, marketing and outreach coordinator for JDRF International, Southwest Ohio Chapter, points out that the general population tends to confuse Type 1 diabetes with Type 2, but that the two are very different. In the latter, the body becomes resistant to insulin, or fails to produce enough.

“One of the biggest misconceptions about Type 1 diabetes is that it is caused by poor diet or lifestyle choices, or insufficient exercise,” says Goodrich.

The other big misconception, she says is that T1D only affects children, since the disease has historically been called juvenile diabetes. Each year, more than 150.000 children and 15,000 adults are diagnosed with T1D. In total, as many as 1.25 million Americans may have T1D and, locally, if affects nearly 31,000 people in the Greater Cincinnati region.

“T1D can strike at any time and, in fact, half of new diagnoses are in adults. The three most common warning signs to look for, in both kids and adults, are extreme thirst, frequent urination and sudden weight loss,” she says.

New math
Back-to-school preparations in the Vorhees household go beyond a backpack of well-stocked school supplies. Vorhees provides Caleb’s school in Newport with a backpack that contains duplicates of items in their household necessary to calculate, monitor and respond to an emergency.

The essentials used to monitor Caleb’s T1D. Stephanie Vorhees keeps one at home and sends one to his school. (Photo by Vicki Prichard)

“Before Caleb could go back to school last year, I had to go have a meeting with all of his teachers and go through everything I was leaving with them and I had to agree to go and do all of his testing injections because he goes to a private school,” Vorhees said. “They didn’t have a nurse and didn’t want the liability, because every single time Caleb gets insulin it’s a different amount. It depends on how many carbs he’s eating,”

Calculations are required in order to administer a shot, and Vorhees has forms that explain the necessary equations. An insulin pump makes life a bit easier, but numerous variables are still at play.

“His insulin pump calculates it for us now, we just have to put the carbs in, but until we got the insulin pump we had to do it ourselves,” says Vorhees. “We’d add up how many carbs he was going to eat and divide by the carb ratio. Then we’d have to figure out what his blood glucose is and then we have a correction factor. You take his blood glucose, subtract the correction factor, then divide by another correction factor.”

And numbers can be as different as night and day – literally.

“Their bodies are more resistant to insulin at different times of the day, so we’ve figured out that during the day he is more resistant to insulin than he is in the morning,” says Vorhees.

There’s an app for that
Today, Caleb wears two patches – one on his arm, that monitors his blood glucose and helps monitor emergencies before they happen, and a receiver on his waist that ‘talks’ into his phone, which communicates to Vorheese’s phone by way of an app designed to display his blood sugar.

“As a mom, you want them to think they can go on to lead healthy, normal lives, and this will just be a bump in the road – they can still do what they want to do – but you’re always scared,” says Vorhees. “You’re always on alert and worried about the ‘what ifs.’ There are so many scenarios that are out of your control.”

The JDRF One Walk Newport takes place Saturday, September 12, 2015 at 1 Riverboat Row, Newport on the Levee. Check-in is 8 am and race begins at 9 am. For more information, or to register, visit JDRF Southwest Ohio Chapter at http://swo.jdrf.org/