A Prick and a Stick – Typical days with type 1 diabetes
A diagnosis of type 1 diabetes (formerly known as juvenile diabetes) can be scary and overwhelming for both the child and his or her parents. Families are forced to take a closer look at food choices and nutrition, get a crash course in insulin injections and wave goodbye to spur-of-the-moment weekend plans and vacations.
But with a positive attitude, as well as medical and peer support, learning to live with and successfully manage type 1 diabetes is possible.
Kathleen Coleman of Charlotte describes her 11-year-old daughter’s initial hospitalization for type 1 diabetes as “surreal,” but credits diabetes educators with helping them get through the difficult time to look ahead with a positive outlook.
“The part of support that was most helpful to me was talking to an adult female who was diagnosed when she was 7, and she is a college-educated, beautiful, young married woman, living a normal life,” says Coleman. “It really helped my husband and me to have an optimistic view of Paige’s future with diabetes.”
According to the Juvenile Diabetes Research Foundation, as many as 3 million Americans have type 1 diabetes. And each year, more than 15,000 children — 40 per day — are diagnosed with type 1 diabetes in the United States.
Type 2 diabetes, which is typically related to a sedentary lifestyle and unhealthy nutrition choices, has been making headlines over the past few years It used to be most common in adults over the age of 40, but is more frequently appearing in children with poor eating habits that don’t get enough exercise. That said, type 1 diabetes in children still is the most dangerous.
The issue is that the pancreas doesn’t produce insulin — a hormone needed to convert sugar (glucose), starches and other food into energy. People with type 1 diabetes must inject insulin several times a day. It can occur in any age group, but generally the diagnosis comes in childhood.
Dr. Mark Vanderwel, a pediatric endocrinologist in Charlotte, uses a “lock-and-key” analogy when explaining type 1 diabetes to his patients. “Our body’s job is to take the food we eat and break it down into the simplest forms,” he says. “Sugars travel from the intestines to the bloodstream, where they are delivered to muscle and liver cells for energy. The door to muscle and liver cells are locked, and you need a key, which is insulin.”
Vanderwel explains if a child has type 1 diabetes, his or her immune system destroys the part of the pancreas where insulin is made. “Kids get sick because they can’t get energy from the food they’re eating. The body becomes so desperate for energy that it starts tearing itself apart,” he says.
Even though type 1 diabetes often puts constraints on a child and a family, Vanderwel says he likes to set his patients up to become “successful, healthy 90-year-olds.” He continues, “Normal kids have cake on their birthday, trick or treat and spend the night with friends. It’s OK to periodically have sweets. It’s just not something to have every day.”
Diabetics should not eliminate carbohydrates, because carbs are necessary to receive insulin. “Eliminating carbs all together could cause complications,” says Vanderwel.
Signs, Symptoms … and Schedules
The initial symptoms of type 1 diabetes include excess thirst, frequent urination, bedwetting in children who have previously stayed dry at night, and weight loss. Type 1 diabetes can be diagnosed with a finger prick or by checking a urine sample for sugar at the doctor’s office.
According to the JDRF, 90 percent of children with type 1 diabetes have no blood relatives with the disease. Scientists currently are studying both environmental and genetic triggers as potential causes of the disease. Vanderwel says it’s type 2 that tends to be more hereditary.
Davidson resident and WBT radio co-host Stacey Simms says she and her family had to educate themselves about type 1 diabetes when her son Benny was diagnosed at the age of 2. “We immediately started him on insulin shots,” says Simms. “We learned how to count carbohydrates and prick a finger in order to read blood sugar. The first few times, the shots were horrible, but it’s just the way it has to be. Without the insulin, your child will die. That’s the motivator that gets you past it.”
Coleman says she and her husband have to make sure Paige has an ample supply of insulin, as well as the medical supplies she uses every day, such as needles, test strips and a working glucose tester to check her blood sugar four times a day. “Our days are much more ‘scheduled’ because Paige must eat, snack, shower and take insulin at particular times during the day,” says Coleman, adding everyone in the family conforms to the schedule.
If diabetes is not carefully managed, serious complications can arise, or in untreated cases, can result in death. One possible complication is diabetic ketacidosis, which occurs when the body cannot use glucose as a fuel source due to a lack of insulin and the byproducts of fat breakdown, called ketones, build up in the body. Symptoms of diabetic ketacidosis include excessive thirst, frequent urination, fruity-scented breath, nausea and vomiting, and abdominal pain.
Advances in Care
About six months after Benny’s initial diagnosis, he began using an insulin pump instead of daily injections. Simms describes her son’s pump as resembling a pager, with a refillable cartridge of insulin inside. The pump is connected to a thin tube that sits under the skin, and it delivers a preset amount of insulin at adjusted intervals.
“Training on the pump is much easier than training on shots,” she says. “We set the pump manually and can make changes to the amount of insulin he gets if there needs to be a correction.” Simms adds that Benny can wear the pump for most activities, except showering and swimming.
Coleman’s daughter has been managing her diabetes with daily insulin injections since her diagnosis, and is now interested in using an insulin pump. The family plans to begin searching for the best pump for Paige’s lifestyle this summer.
Researchers also are working on developing an artificial pancreas, a fully-automated system to dispense insulin to patients based on real-time changes in blood sugar levels. In January, the JDRF announced a partnership with Animas Corporation to develop this automated system.
The first-generation system will be partially automated, using an insulin pump connected wirelessly with a continuous glucose monitor, which will read glucose levels via a sensor with a hair-thin sensor wire inserted just below the skin, typically on the abdomen. The sensor will transmit readings to the insulin pump, and insulin will be delivered through a small tube or patch on the body. A computer program, located within the pump, will monitor safe glucose levels throughout the day and night, and help prevent hypoglycemia and extreme hyperglycemia.
“It is my dream children will eventually have sensors and monitors that would require them to check blood sugar only once or twice a day,” says Vanderwel. “Now, most kids check it somewhere between four and 10 times a day.” He says researchers hope to have the first artificial pancreas system ready for use in the next four years.
Support to Help Normalize Kids’ Lives
“The Juvenile Diabetes Research Foundation does an amazing job of helping families find their way,” says Simms. “Those first few weeks are unbelievably stressful. There are so many questions. Only a parent of a child with (type 1 diabetes) really knows what you’re going through.”
Coleman advises parents to keep a positive attitude. “Paige taught the neighborhood how to give her an injection, and educated them about ‘free’ carbohydrates for her and about nutrition in general,” she says. “I know that one of the neighborhood kids, or even Paige, will go into the health care profession because of this.”
While Simms admits managing Benny’s diabetes is a full-time job, she is grateful he remains an active five-year-old boy, who loves all sports and happily plays soccer. She currently is working on a diabetes management plan with Charlotte Mecklenburg Schools for when Benny enters kindergarten in the fall, and she feels confident his needs will be met.
Simms also remains optimistic there will be a cure for type 1diabetes within Benny’s lifetime. To help the cause, 100 percent of the proceeds from her book “I Can’t Cook, But I Know Someone Who Can,” are donated to JDRF.
“Someone we’ve known for a while told me just this week she was surprised to learn Benny has type 1,” says Simms. “She apologized, but it made me feel terrific. She’s seen Benny eat, play and just hang out with friends — that tells me we’re doing a good job of letting him be a kid first and a diabetic second.”
Watch for These Signs
A diagnosis of type 1 diabetes is made by a doctor following a finger-prick blood test or urine test to check sugar (glucose) levels. But, as a parent, you may see some of these symptoms:
• Extreme thirst
• Frequent urination
• Drowsiness, lethargy
• Sudden vision changes
• Increased appetite
• Sudden weight loss
• Fruity, sweet or wine-like odor on breath