Living with type 1 diabetes

Sheila Robinson still remembers the day her daughter, Brenna, then age 11, was diagnosed with juvenile diabetes. She noticed in the fall of 2006 that Brenna was tired and not feeling well.

"We thought she could rest over Christmas vacation," Shelia Robinson said. "But the symptoms increased and by then, Brenna was drinking gallons of water with frequent urination."

Sheila, who is a nurse, called their doctor where labs were drawn showing Brenna's blood sugar was 507 - well above the normal range of below 100.

Diagnosed with type 1 diabetes, Brenna was admitted to St. Luke's Hospital where doctors started her on insulin injections four times a day.

"The night before we took her to the hospital, we talked about her diagnosis, getting shots and possibly an IV, what she will and won't be allowed to eat," said Shelia. "It was a rough night. Brenna was very upset at first. She thought she'd always have to have shots, and Brenna's a bad shot taker. The hospital staff was really great, and gave her lots of education. Brenna learned to do the finger poke, handle shots and check her blood sugar levels."

Diabetes education

What got Brenna and her family through the initial days was their referral to St. Luke's Diabetes Education, where they met with a nurse and dietitian team to learn about diabetes and how to manage it.

"Their education started while she was in the hospital," said DeAnn Jurgensen, the nurse who worked with the Robinson family. The family learned the skills they needed until they came in for outpatient diabetes education.

"We strive for a seamless transition from inpatient care, to home, to outpatient education," said Jurgensen. "What was special about the Robinsons is that the entire family - her mom, dad, older sister and Brenna - attended every single one of our sessions. Usually, it's just the mom and child. But this is just a special family. Initially family members are invited talk to about any issues they may have. There's so much fear and anxiety in the beginning."

Over a course of about six sessions, they learned about diabetes, how it affects the body and how to manage it through changing life situations; how insulin works and how to adjust it; how to incorporate a diet and exercise program; how to prevent long-term complications and how to handle sick days.

Insulin pump therapy

Last fall, Brenna started using an insulin pump and is doing very well. An insulin pump is a pager-size device that delivers insulin through a cannula that the patient inserts under the skin and changes every three days. A pump delivers a tiny amount of insulin continuously throughout the day. At meal time, the pump user programs a larger amount of insulin to be delivered to cover the meal. The pump gives Brenna the flexibility to make insulin dose changes in response to different situations in her day.

"We help the patient use the pump to try to mimic what a natural pancreas would do," Jurgensen said.

A few months after she started using an insulin pump, Brenna started using a continuous glucose sensor. She inserts a glucose sensor under her skin, which continuously senses her glucose and sends the data to her insulin pump. Brenna can glance at the screen on her pump throughout the day to see what her blood glucose level is and if it is rising or falling. She can make adjustments in her food intake or insulin dose to avoid low blood glucose (hypoglycemia) instead of having to experience the symptoms of hypoglycemia and take time to treat it. The sensor also offers her parents comfort because the pump will alarm, if her blood glucose drops below a preset level in the night.

"At this time, the pump does not respond to the data received from the glucose sensor," said Jurgensen. "This technology will be available in the next few years. When it is available it will be like an external, artificial pancreas."

Periodically, Sheila uploads the information from Brenna's pump and sensor to the pump company's web site where Jurgensen can review the data and discuss changes in Brenna's pump settings with Sheila.

Early detection and treatment

St. Luke's Diabetes Education staff recommends early treatment and education after a diagnosis of type 1 diabetes. Teamwork is essential for good diabetes management.

"A child with type 1 diabetes may have a large team including parents, doctors, nurses, dietitians, teachers, coaches, siblings and extended family," said Jurgensen. "We try to work with as many of these team members as possible so everyone knows how to help this child/family cope with diabetes."

An estimated 35 children in the U.S. are diagnosed with juvenile diabetes every day. In total, about 17 million people in the U.S. have diabetes, of which about 1.4 million have type 1 diabetes.

"I cried for a couple of days after the initial diagnosis," said Shelia. "But I've learned to think about it altogether differently. I don't want it to be the only thing I think about when it comes to Brenna. It's a part of our life, but not the main thing."

Overcoming another hurdle, the family even went to Brenna's school to talk about diabetes with her classmates.

"Rumors were flying," said Sheila. "So we talked to students in her class, explained that she might need extra snacks and insulin for the rest of her life, and suggested some steps to take in case she started acting differently."

Now Brenna takes it all in stride.

"She's pretty matter of fact about it," said Sheila. "She never really complains about it. She just knows it's something she has to do."

Today, Brenna is an active 12-year-old who is in drama class at school, plays the cello and piano, swims and loves to hang out at the pool in the summer with her friends.

Plus, she only needs to make an occasional visit to St. Luke's Diabetes Education to discuss concerns or make adjustments as she grows.

"She's doing phenomenally, both physically and emotionally," said Jurgensen. "Brenna is coping very well because she has such a supportive family."

To learn more about St. Luke's Diabetes Education call (319) 369-7440 or visit our Diabetes section.