Understanding Juvenile Diabetes
When Vivian Schaffer's son, Daniel, was 6 years old, he began suffering from chronic fatigue, had dark circles under his eyes, lost several pounds, had an unquenchable thirst and began making multiple trips to the bathroom both day and night. A trip to the doctor pinpointed his blood glucose level at 1,200, when it should typically be in the 100 range. He was diagnosed with juvenile diabetes and his family's world turned upside down.
Type 1 diabetes, also known as juvenile diabetes, is an autoimmune disease in which the immune system attacks and kills the cells in the pancreas, where insulin is made. Because insulin is a hormone needed to convert sugar (glucose), starches and other food into energy needed for daily activity, people diagnosed with this form of diabetes must take injections to replace the insulin they no longer make, Schaffer says.
Schaffer, who is from Cookeville, Tenn., says that following her son's diagnosis, she, her husband and two daughters went through a week of intense training on everything from giving insulin shots, dietary needs, how diabetes affects the body and how to figure up proper insulin doses. They were assigned a diabetes team that included a pediatric endocrinologist, a registered nurse, a dietician and a social worker to help the family cope with Daniel's diabetes diagnosis.
"Juvenile diabetes affects about 5 to 10 percent of the population," says Jenna Scarsi, a certified diabetes educator, dietician and the 2006 winner of Bayer Dream Fund, the company's annual contest for people with diabetes who want to achieve a special dream that may have not been possible if they didn't have their illness under control. With the $100,000 she received, Scarsi took "Lights, Camera, Cure," an interactive diabetes health fair that includes a private screening of a family movie, on the road to five major cities over the course of a year.
A Revolutionary Technology
Scarsi, now 30 and living in a suburb of Chicago, Ill., was 11 when she was diagnosed with Type 1 diabetes. She now controls her diabetes with the help of an insulin pump, which she describes as working like a pancreas with a battery.
"It gives you a continuous drop of insulin per minute," Scarsi says. "It really functions like a normal pancreas would, but it is run by the person with the diabetes. It's a fabulous tool that you can disconnect to take a shower or go swimming."
Schaffer's son, Daniel, recently started using an insulin pump, which he named Zack, and his mother believes it allows him so much more freedom even though he is connected to it 24 hours a day.
"When he was first diagnosed, he was on two shots a day and four to eight finger pricks," Schaffer says. "Then he went to four to six shots a day with four to eight finger pricks. When he changed over to the insulin pump, it allowed him to change his infusion setting every three days, and he tests his blood sugar six to ten times a day," she says.
How Family Can Help
Through her job as a diabetes educator, Scarsi works with children who have received a juvenile diabetes diagnosis, along with their family members who are also affected by the illness daily. She says for family members, the hardest part of receiving the diagnosis is having to monitor food choices so closely.
"The whole family should be aware of carbohydrates," says Scarsi, who recommends that families organize their pantries with a shelf of healthy snacks that are individually labeled with carbohydrate content. Parents and siblings can work together to look up the carb content of the snacks and label them in plastic baggies. She also counsels the families to be prepared with certain supplies during outings and sporting events.
"It's good to bring a glucose monitor, insulin depending on the time of day, glucose tablets and a snack," Scarsi says. "You can have one of the siblings be a 'buddy' to remind the child with diabetes to bring their supplies."
Kim Rahfaldt from Watertown, Wis., discovered her daughter, Amanda, had juvenile diabetes when she was 4 years old. She says her older son tries to help out by noticing when Amanda seems extra tired. "We haven't tasked him yet with taking care of her," she says. "As he gets older, we will discuss more ways for him to help."
Rahfaldt's daughter doesn't have an insulin pump, but checks her blood sugar five times a day on average and receives three insulin injections a day.
"We watch her diet very closely," Rahfaldt says. "She can do all the same activities, but we have to make sure to have snacks on hand or feed her before gymnastics class. It has taken away from the flexibility – but as long as we have some food and [a] meter with us, we can do just about anything."
Rahfaldt says food outside the home is where things can get a little tricky. "Parents bring snacks to school or to events and if I haven't planned for it, it can be an uncomfortable situation," she says. "It makes my daughter feel bad if she can't have what the other kids have because she ate already. I find I have to plan for everything, and try to get parents, teachers, etc., to communicate with me all the time."
"Type 1 diabetes is a 24-hours-a-day job," Schaffer says. "You constantly have to think about it. There are over 100 things that can affect blood sugar and there are only three – food, activity and insulin – that we can control. We have to count every carbohydrate that passes through Daniel's lips, keep track of how active or inactive he is, take into account his blood sugar and match his insulin intake accordingly."
Schaffer says that a common misconception is that people with Type 1 diabetes can't eat sugar. In reality, a person with the illness can eat whatever they want to as long as it is covered by insulin. "Obviously, different foods affect the blood sugar differently and so there are some we avoid or manipulate the insulin intake in order to make it fit well into his meal plan," she says.
Be Your Child's Advocate
Schaffer's son is the only one in his school that has juvenile diabetes, but when she found out there were 35 more families in her county that had children with the illness she helped start a support group focused on the needs of those children and their families. She also works with the local school system to ensure more funding toward the school health department and serves as a Juvenile Diabetes Research Foundation mentor for newly diagnosed families.
Scarsi also suggests that children and their parents compose a letter to their teacher before the start of the school year, or after a diagnosis, so that the teacher might understand their unique situation a little better and learn what they can do to help make the child's life a little easier throughout the year.
"I have had a great experience with my daughter's school," Rahfaldt says. "They check her blood sugar every day at lunch and call when a reading is above or below a certain number. If they think she is low or high during the day, they go ahead and double-check her levels then, too. My daughter actually checks her own sugar and the teacher supervises."
Rahfaldt also points out that living with a diabetic child is a challenge. "I worry all the time," she says. "I am trying to teach her to be humble about the disease and that it's just a part of who she is. It breaks my heart when she tells me that all she wants is to find a cure."
Scarsi knows that for children, receiving a diagnosis of juvenile diabetes can be intimidating and scary. That's why the "Lights, Camera, Cure" project actually has youth advocates living with the illness helping to explain and demonstrate the ins and outs of the illness to the attendees. "With well-controlled diabetes, they're going to live a healthy lifetime," she says. "I encourage parents to remain in an active role in their children's lives at all times."
We are the best advocate for our children and it is important that they see you fight for them. This way they learn to fight for themselves, Schaffer says. "These kids are strong, brave and smart but they are only human and they need a break once in a while," she says. "Above all they are kids first and people with diabetes second."