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Controlling Type One Diabetes

by Charissa Hipp + photos by Chris Jackson

Diabetes

Knowing what to look for and how to treat this complicated disease is vital to managing its effects.

Nearly 26 million children and adults in the United States have diabetes, according to the American Diabetes Association. Type 1 diabetes is typically diagnosed in children and young adults. It used to be known as juvenile or childhood diabetes, but according to research by the Juvenile Diabetes Research Foundation, 85 percent of those in the U.S. with type 1 diabetes are adults. It is now viewed as a chronic disease that affects people of all ages.

Type 1 diabetes occurs when the body does not produce enough insulin, which is a hormone required to convert sugar, starches and other foods into energy. The diagnosis is given when the pancreas is no longer capable of producing insulin. Unlike type 2 diabetes, type 1 cannot be prevented or delayed through diet and exercise. Although the disease can be fatal, people of all ages can learn to manage their condition and live long, productive lives. Insulin is administered daily through multiple injections with insulin pens, syringes or an insulin pump. Anyone with type 1 diabetes must have their blood glucose levels monitored to know how much insulin should be administered. The amount can fluctuate in conjunction with nutrition, exercise, and the levels of other hormones in the body.

Aileen Grabill’s son Ian was diagnosed with type 1 diabetes at just 14 months of age. “It’s difficult at that age because they can’t tell you how they’re feeling,” Aileen says. “For Ian the two primary indicators were tremendous mood swings and excessive thirst. He was a pretty mellow kid normally so the mood changes were pretty striking to us. He would also get angry if he didn’t have something to drink because he was so thirsty yet he was completely drenching his diapers. It took us about three or four days of this until we realized something was really wrong and took him to our pediatrician. Based on everything we said, they were able to diagnose him pretty quickly with a glucose test.”

The Grabill family, who recently moved back to Maryland, were living in Denver when Ian was diagnosed. Aileen and her husband Brian were immediately referred to the Barbara Davis Center for eight hours of intensive training where they learned how to test blood sugars, count carbs, and calculate insulin dosages based on the carbs. “We were led to using an insulin pump because with Ian’s size, his dosages are so tiny in comparison to an older child. An insulin pen and even syringes don’t dose in such tiny increments,” Aileen says.

Arleen Shuster’s son Ben, now a 20-year-old college student, was diagnosed with type 1 diabetes when he was about 13. Arleen says it’s common for adolescents to be diagnosed around the time they go through puberty. Insulin requirements for adolescents can dramatically increase at the onset. Arleen, who resides in Hagerstown, is a registered dietician and says she should have recognized it right away. “All the major signs were there and I should have known, but you never think it’s your own child.”

Ben needed insulin injections immediately, which Arleen describes as a scary realization that brought about a lot of questions, like how to give the shots, when and where to give them and what the procedure was for using the syringes. “I immediately thought how will I know what to do? How do I give injections to my son?” Fortunately, Ben learned through classes at Children’s Hospital how to give himself injections from day one, Arleen says. “I never had to give him shots.”

“This area is really great for resources,” Arleen says. “We opted to go to Children’s Hospital but Hopkins is great too. Both offer invaluable classes. We all went to classes, including classes for siblings and parents.”

Ben uses an insulin pen and his hemoglobin/A1C has responded well to that, Arleen says. “As an active teenage boy, it was nice for him to not have to have something on his body at all times.”

Hannah Viar’s aunt noticed that she was drinking an unusually large amount of liquid for a four-year-old and suggested that Hannah, now 21, be tested for diabetes. Hannah’s pediatrician checked her blood sugar and it was high, Hannah recalls, but not dangerously high. “I was blessed that it was caught early,” she says.

Hannah received insulin shots until she was 10, and then started utilizing an insulin pump. She spent a few days in the hospital, and with help from her mom, she learned how to properly use and manage the pump herself. The transition wasn’t without difficulties though. A year into using the insulin pump, Hannah began having seizures and went into a diabetic coma for a day. This was from the programmed amount of insulin not being adjusted properly to Hannah’s level of exercise. Once the levels were adjusted she came out of the coma.

Hannah says there are hormonal changes that make it challenging to be a female with type 1 diabetes. “Sometimes my blood sugar will go from 150 to 350 in the blink of an eye for no good reason. It can definitely be frustrating.”

One of the biggest adjustments to having a child with diabetes is the constant monitoring that is required around the clock. The Grabill family has developed a routine to manage Ian’s diabetes — one that doesn’t involve sleeping in or putting him to bed without testing. “We live our life in two hour increments,” Aileen says. “We test him, he eats, we test him two hours later to confirm that the dosage did what it was supposed to, we test him two hours later when it’s about time to eat again, we test him two hours later to check the dosage, and so on.” It’s also changed the way they travel because of the need to test frequently. “We do not leave the house without a plethora of supplies. We always have back-up syringes, back up insulin, back up pump sets … you just never know when you’re going to have to treat a low.”

Arleen says the hardest part for Ben was dealing with his diabetes at school. “Every time his blood sugar would drop he’d have to miss class and go to the nurse’s office and then get a note to go back to class,” Arleen says. “He just wanted to be a normal kid.”

Hannah’s mom home schooled her because she was worried that Hannah’s diabetes wouldn’t be monitored closely at school. She felt more confident having Hannah at home where she could personally keep track of the numbers.

Families are constantly faced with the misconceptions people have, often times confusing type 1 and type 2 diabetes. “People used to be surprised that Ben had diabetes and would say things like ‘But he’s so thin,’” Arleen recalls.

Aileen has had similar experiences with Ian. “People will say things like ‘I have an uncle who has diabetes and he just has to be really careful about what he eats,’” she says. “Sometimes I feel like people look at us like we were putting Coca-Cola in his bottle when he was eight months old and that’s how we got here.”

Unlike type 2 diabetes, type 1 can’t be avoided with proper diet and exercise. Counting carbohydrates, monitoring blood sugar, and taking insulin is required to live a long, healthy life but it doesn’t have to define the person. “I don’t want it to be a central part of his life.” Aileen says of Ian. “I want it to be another factor, but not his identity; not who he is.”

Signs and symptoms of type 1 diabetes in children include:

  • Increased thirst and frequent urination
  • Extreme hunger
  • Weight loss
  • Fatigue
  • Irritability or unusual behavior
  • Blurred vision
  • Yeast infection (in girls or babies)