KMBZ Cover Story: Coping Without a Cure, A Family Struggle

January 10, 2019 - 6:31 am
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New technology is helping diabetes sufferers, and their parents, keep track of blood sugar and react in a timely manner, but the new devices have their drawbacks.

"The beeping on the phone, it keeps flashing, and there are days where it's beeping a hundred times a day and you think you're going to lose your mind," said Katie Harris, the mother of a 10-year-old boy with the Type I diabetes. "Twenty-four/seven, every single day, it does not take a break, even for an hour."

Diabetes is an autoimmune disease. The immune system attacks the pancreas and kills all of the cells that produce insulin, a hormone that allows the body to process sugar into energy.

"It's really tough to deliver that news to a family," said Dr. Ryan McDonough, a pediatric endocrinologist at Children's Mercy Hospital in Kansas City. "To essentially tell them about a chronic life-threatening disease an hour and a half ago they didn't have any idea about."

"It takes an emotional toll."

Left untreated, without insulin, prescribed by a doctor, diabetes has devastating long-term consequences. 

"Neuropathy, which is loss of nerve sensation, particularly in the fingers, toes, feet and hands, nephropathy, which is kidney damage, and then there's retinopathy, the vascular damage that causes people with diabetes to go blind," McDonough explained.

High blood sugar is not the only problem with diabetes sufferers. The consequences of low blood sugar are immediate, and can be deadly, especially at night, when a child can sleep through the highs and lows, never aware that their sugar levels are out of whack.

"The statistic is that one in twenty children, Type I, will die in their sleep," Katie Harris said. "I don't want to even think about how many times something went wrong."

With advances in technology, blood sugar levels are not taken every hour or so. Measurements can come every five minutes. Implants in patients send messages to apps on smart phones to keep track. The apps sound alarms when a dangerous situation is developing.

Another family in the Kansas City area knows what Katie Harris goes through, times two. 

Bill and Susan Bell have two boys who were both diagnosed with Type I diabetes as toddlers. Adam is a 7th grader and David is 10 years old.

The boys have to be more mature and disciplined than other kids their age. They both know how to weigh their food, figure carbohydrate content and determine how their bodies will react to diet and exercise. Their mother diligently checks sugar readings on her smart phone.

David leans on his mother to help control what he eats, but she is not around all the time.

"When I'm on my own, I usually remember more, because I know that Mom sometimes can't check on me," David said.

The world’s first artificial pancreas will help make type 1 diabetes more manageable: https://t.co/h6PUbPXWwO

— Cleveland Clinic (@ClevelandClinic) January 9, 2019
Susan keeps tabs on what the boys ingest, always with an eye on how their bodies will react in the short term and later in the day and night.

"It's almost like chess or something, where you need to be thinking a few moves ahead of where you are," Susan said.

Susan said if she lets down her guard, and allows a late night snack, she will be up all night checking blood sugars. The boys' monitors give approximate readings, but they are not precise enough for Susan to sleep worry-free. 

Living with Type I diabetes means the boys can have some treats, but they have to account for every gram of sugar and carbohydrate.

"You want to have (snacks), but then when you realize what's going to happen if you do, you kind of don't want to have them," Adam said.

All the hard work and sleepless nights the Bells experience for their boys is part of an effort to prepare them for the day when they need to manage their disease for themselves.

"I hope that their diabetes doesn't hold them back in any way, and they're able to manage it," Susan said.

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