RICHMOND —
Diabetes is the one of the most common diseases in school-aged children. In 2010, around 215,000 young people in the U.S. under age 20 had diabetes, according to the Centers for Disease Control and Prevention.
In Madison County schools, including Berea Community and Model Laboratory, there are 48 children with type 1 diabetes and 14 known cases of type 2 diabetes, said Kim Decoste, registered nurse and certified diabetes educator from the Madison County Health Department Diabetes Center of Excellence.
Type 1 diabetes occurs when the body’s immune system attacks the insulin-producing beta cells in the pancreas and destroys them. It usually develops in young people. Type 1 sufferers must be dependent on insulin therapy for the rest of their lives.
Without insulin, glucose (sugar) — the body’s main energy source — builds up in the blood, according to the American Diabetes Association (ADA).
Type 2 diabetes often appears in middle-aged and older adults and was formerly labeled “adult-onset diabetes.” This condition is characterized by high blood glucose levels caused by the lack of insulin or the body’s inability to use insulin efficiently.
A misconception about type 2 diabetics is that they are all overweight, according to the ADA. However, while family history, ethnicity and age also play a role in its development, the risk factor of obesity seems to have an effect on the numbers, said DeCoste.
“Compared to national rates, we (Madison County) appear to have a higher rate of type 2 diabetes among children,” Decoste said. “There may be a correlation between Kentucky’s high rate of childhood obesity and poverty that can lead to this. This is one more reason to support legislation related to more physical education, planned recess and educational experiences that include moving.”
The increased incidence of type 2 diabetes in youth is a “first consequence” of the obesity epidemic among young people, and is a significant and growing public health problem, said a report by the National Diabetes Education Program (NDEP).
The most important thing to emphasize is that children with diabetes, type 1 or 2, can live a very healthy life. Like all of us, they need to pay attention to healthy food and physical activity, DeCoste said.
Although some older generations have simply referred to diabetes as having “the sugar,” the disease itself and management of it by the individuals it affects, appears to be more complicated, she said.
Here are the stories of two children living with type 1 diabetes in Madison County.
Logan Knuckles, age 8 (as of today)
When 9-month old Logan downed two and three bottles in one nighttime feeding, his mother Ragan knew that something was wrong.
“Early that evening, he had been crawling around on the floor and every now and then he would stop and lay his head down,” Knuckles said.
The next day, already prepared to set up an appointment with her pediatrician because of his unusual behavior, the baby-sitter called her at work with more troubling news.
“The baby-sitter had put Logan down for a nap with a dry diaper, when he woke, his sheet was thoroughly soaked,” she said.
Logically, the more bottles he drank, the more he would urinate, Knuckles thought. She feared Logan had a bladder or kidney infection.
When Knuckles took Logan to his pediatrician, the baby’s symptoms were thought to be the result of a fleeting virus because there were no signs of infection. A diagnosis of diabetes was unthinkable because the disease usually doesn’t present itself at this age, Knuckles said.
The immunologic process that leads to type 1 diabetes can begin years before the symptoms of type 1 diabetes develop, according to the NDEP. But Logan was not even a year old yet.
Knuckles refused the virus diagnosis and insisted there was something wrong with her child.
After doctors found protein in his urine and a finger prick produced a blood sugar level over 600 (100 to 180 is normal), Logan was rushed to the hospital where he spent more than 24 hours in the pediatric intensive care unit (PICU).
Logan had developed diabetic ketoacidosis (DKA), a complication of diabetes that occurs when your body produces high levels of toxic blood acids called ketones. Without enough insulin, your body begins to break down fat as alternative fuel, a process with produces the ketones, as stated by the ADA.
Logan’s DKA was so severe, it was throwing his heart rhythm off. His pediatrician visited them in the PICU and told Knuckles if they had gone home that night, Logan would not have survived.
“You hear about ‘mother’s intuition’ — I knew in my gut that something was not right,” Knuckles said.
“A friend said to me later: ‘They are the medical experts, but you’re the expert on your child.’ You have to be an advocate for your child,” said Knuckles, who has type 1 diabetes herself, but wasn’t diagnosed until just recently.
Through stringent carbohydrate counting and insulin therapy, Logan has never returned to the hospital.
Although Logan admits that “it hurts sometimes” and the needle “kinda stings,” he has something to say to those children who are scared of getting shots: “It’s just a little needle. If it’s not that big, it doesn’t hurt too much,” he said.
However, strawberry ice-cream and cookies are worth a shot, he said.
Every day at lunch, a para-educator trained by the school nurse counts the carbs Logan has eaten on his lunch tray, which is recorded in a notebook.
Logan can inject himself, but someone must supervise to make sure the right amount is administered. Logan must take one unit of insulin for every 12 carbohydrates consumed, though this number is different for every person living with diabetes.
“As a parent, I wish we could have a nurse at every school. All the other students with diabetes aren’t as fortunate to have their moms working right there in the school to watch over them,” said Knuckles, a counselor at Waco Elementary, the school which Logan attends.
“As an employee of the district, I see budget cuts and how tight we are on money,” she said. “I can understand funding issues, I just feel like we’re talking about the health of a child and that’s crucial.”
She sympathizes with other parents who must worry about their insulin-dependent children at school. Although it is her goal to teach her son how to manage his own blood sugar, sometimes there needs to be a medical professional to “make that judgment call” when it comes to fluctuations in glucose levels, she said.
Logan’s father John teaches at Farristown Middle, where Logan eventually will attend.
Being the parent of a child with diabetes comes with a different set of worries, Knuckles said.
“You take for granted things like going through a drive-thru and handing your kids the food as you drive down the road rushing to some event,” she said. Instead, they must pull over and count the carbs.
Logan has never spent the night with anyone except for his two grandmothers and one aunt. He has never attended day care because most facilities are not trained to handle children with diabetes and he only has two baby-sitters who can watch him, Knuckles said.
“There are things he’s had to give up and, as parents, there are things we have to give up such as date nights,” she said, “because your children are more important.”
They still use a baby monitor because sometimes Logan whimpers or makes a noise that alerts them to check his blood sugar, which can drop in the night.
Logan carries what he calls his “go bag” — a name he coined after he got too big to haul all his diabetes supplies in a diaper bag. One day his mother told him to get his diaper bag to which he replied, “Mom, I don’t wear diapers anymore. That’s my ‘go bag’ — everywhere I go, it goes.”
As Logan tells it, he’s got “zero sisters and three brothers.” Hunter is 16 and Alex is 10. Logan has a fraternal twin, Landon. They were born on Christmas day.
Sometimes, Logan gets frustrated when he has to interrupt playtime to check his blood sugar or when his brothers can eat random foods out of the cabinets and he can’t.
“Landon eats with his mouth open right in front of my face,” Logan said.
However, sometimes, the tables are turned and Logan eats and drinks food in front of his brothers or classmates when his blood-sugar levels are low.
“I tell them I have diabetes and I check every two to three hours and when I eat snacks I have to get insulin because my body is not making insulin,” Logan said.
Logan also knows how to read nutrition labels and serving sizes. Knuckles said they have tried to stress the importance of managing his life-threatening disease by using “diabetes language” with him since he was diagnosed.
“I watch what I eat,” Logan said, “I don’t know any other way.”
Tara Smith, 12 years old
When Tara Smith gets up in the morning, she immediately checks her blood-sugar levels. Usually she will eat a bowl of cereal, write down how many carbs she ate, and divide that number by four to calculate how much insulin she needs for that meal.
Tara must get one unit of insulin for every four carbohydrates she consumes.
Before heading off to school, the seventh-grader always gives herself an extra four units of insulin because her glucose levels usually get high before lunch, something she attributes to “the stress of school” — one of the factors that can affect glucose levels, she said.
At lunch, she checks her levels again before she eats. After lunch, she goes to the school office where she administers her own shot. When she gets home, she checks her levels again and makes necessary corrections either by taking more insulin or eating more carbs.
“You work with the flow of it,” said Shannon Smith, Tara’s mother.
Glucose levels are checked two hours after she eats. If they are in range, Tara cannot eat anything with carbs because her insulin still has two hours to work, Smith said. However, she can eat foods that are carb-free, such as bacon, ham, roast beef, eggs, green beans and Vienna sausages (one of Tara’s favorites).
“We might have a party at school, but if we just finished lunch, I can’t eat the chips or cupcakes because I have to wait four hours every time I eat carbs,” Tara said.
On the other hand, all six of Tara’s teachers at Farristown Middle School keep snacks for her in case her levels bottom out.
“Mr. Bryant has the best snacks because he always has a bunch of candy,” said Tara, who enjoys the “big humongous Hershey bars.”
One of her teachers also has diabetes and connects with her about the disease.
“They all take care of me,” Tara said of her teachers.
Diabetes interferes with some of the things Tara loves to do, because physical activity affects blood sugar levels.
“I’m into basketball and soccer, but I can’t really play because I have diabetes,” Tara said, “I could play, but I would have to watch every move I made. I’d have to check every 10 minutes. By the time I made a shot, I would have to run back to the bench.”
However, children can still become overweight with type 1 diabetes and need a moderate amount of exercise every day, her mother said.
Tara exercises by walking around with her iPod and her 100-pound, 2-year-old German shepherd named Sable.
“Sable knows I have diabetes. I can tell that she cares for me and she loves me more than the rest of the family. She always runs to me and makes sure I’m OK. I’m never out of her sight,” Tara said.
“Sable licks her a lot — probably testing her sugar,” joked Smith, but who also is referring to what are called “diabetes detection dogs,” dogs trained to sense declining blood sugar in their masters before any symptoms appear.
When Tara was 3, her mother noticed that she would stay very thirsty.
“Then she started losing weight, which I thought was typical because she was growing,” Smith said.
But Tara began to eat all the time — 4 5 minutes after she ate she would be extremely hungry again, she said.
Tara also craved Reese’s cups (something she still loves to this day) and would beg her mom for a pack every morning.
“I wasn’t going to deny her — she’s my only child, you know? I wanted a pack of Reese’s, too,” Smith said. “I realize now, her body was needing that so bad.”
When Smith took Tara to the doctor, the blood test revealed that she had a glucose level of 500. The doctors told her “she has diabetes and she’s not doing good” and recommended that she see a specialist immediately.
Three-year-old Tara spent a week in the hospital.
When Smith took her daughter home to begin the management of her disease, she remembers Tara screaming while she would hold her down to give shots and check glucose levels.
“For the longest time, I had to sleep with her to make sure she was OK because we were new to diabetes, like most parents are,” said Smith, who also took advantage of that time to poke Tara while she was sleeping.
One thing that Smith knows for sure is that “you always have to be sure your child has their medication,” she said.
Although Smith — a project manager at the Bluegrass Army Depot — has good insurance coverage, diabetes supplies can get expensive.
At bedtime, Tara injects 37 units of Lantus, a long-lasting insulin that stays in her body for 24 hours to maintain her levels. Tara requires a four-pack of Lantus every month, which costs $32.
Throughout the day, she uses an insulin pen called Novo Nordisk that contains 300 units of a fast-acting insulin called Novolog, which takes care of the carbs she eats during her meals. She requires eight pens a month, totaling $80. She goes through 100 insulin pen needles a month, which range from $20 to 30 dollars.
The lancet, which is the spring-loaded device used to prick her finger, requires disposable needles as well. Tara uses around 102 lancet needles a month, which cost between $50 and $55.
To test her glucose levels, Tara must have test strips that she will insert in her glucose meter. She uses around 100 a month, costing $30 to $35.
Even with the best insurance, Tara’s diabetes supplies cost more than $200 a month.
But, the true cost of Tara’s diabetes is the burden of managing the disease every moment of the day.
“It gets old. You get tired of poking yourself and giving yourself shots,” said Tara, who has to rotate her injection spots occasionally because the areas get tough and non-receptive.
“I’ve had diabetes for nine years and my friends say it’s surprising I don’t have a bunch of holes in me because I poke myself so much,” she said.
But the alternative to insulin therapy is daunting.
“You can have a pancreas transplant and if her body accepted it, she wouldn’t have diabetes anymore. But, then she’d have to take shots to make sure her body doesn’t reject the pancreas — it’s just too much of a risk,” Smith said.
“Scientists will find a cure one day,” she said, “I keep that hope.”
Crystal Wylie can be reached at cwylie@richmondregister.com or 623-1669, Ext. 1669.
