The new diabetes education center at CHKD has been a blessing for 11-year-old Aimee Payne. She was introduced to it unexpectedly in the summer of 2005 when she learned she had a chronic, life-threatening disease with the risk of severe complications.
It had been a busy summer of softball for the Yorktown all-star, so when Aimee became tired and disinterested in food, her mother, Alison, simply thought the heat and humidity of a Hampton Roads July was taking its toll.
But the constant thirst, frequent urination and loss of more than 30 pounds signaled another cause. So they headed for the pediatrician’s office where a simple test revealed that Aimee had diabetes.
“I was stunned and frightened and not sure what to do,” Alison said, “but everyone assured me CHKD would get her quickly on the road to recovery and teach us everything we needed to know to manage the disease.” The pediatrician sent her to CHKD that very day, where she was immediately admitted.
Aimee was met and cared for by pediatric endocrinologists Reuben Rohn and Marta Satin-Smith and a support team from CHKD’s diabetes education center, where her recovery and learning began in earnest. For four days, she and her personal support team – her family, including dad Derrick and her siblings – received an intense education on the disease and how to manage it.
CHKD’s diabetes specialists care for more than 1,200 children in Hampton Roads. Each year more than 125 local children are diagnosed with the disease.
They learned that Aimee had type 1 diabetes, which means her pancreas had stopped making insulin, the hormone that enables the body to use glucose (a form of sugar) found in food. As a result, the glucose was building up in her blood, overflowing into the urine and passing out of her body. Her cells were starving for growth and energy. To compensate, Aimee’s body was attempting to use fat to generate energy. The fat breakdown caused the formation of acids that could result in coma or even death.
Balancing diet, insulin and exercise is the key to managing the disease. Aimee and her family learned what she must do to monitor blood sugar levels, count carbohydrates and administer insulin injections several times a day.
Although the flood of information was at times overwhelming, they learned that more than 1,200 children in Hampton Roads are cared for by CHKD’s diabetes specialists. And each year more than 125 local children are diagnosed with the disease.
The best news for the Paynes came when they learned that CHKD’s diabetes specialists would be there for them every step of the way – no more than a phone call or visit away. They had started a new, long journey in Aimee’s life, and CHKD would provide the road map.
“It was amazing,” Alison said. “They took great care of Aimee and our family. They made her feel better right away and answered all of our questions. They made it understandable and helped us feel confident we could handle this new challenge.”
But even after they left the hospital and Aimee began competing again in softball the very next week, the learning didn’t stop.
Most of CHKD’s patients have type 1 diabetes, like Aimee, but there are an increasing number of children with type 2 diabetes due to increasing rates of childhood obesity. In type 2 diabetes, the body still produces insulin but doesn’t use it efficiently.
“It is vitally important to control both types,” Dr. Satin-Smith, medical director of the diabetes center, says, “because they can have the same serious long-term health effects, including very serious heart, nerve and kidney problems.”
For that very reason, CHKD’s diabetes education center was created in 2005 to meet the needs of this growing population. It is housed on the hospital’s second-floor outpatient area, conveniently next door to the endocrinology clinic where children with diabetes typically visit every few months.
The goal of the staff, which includes three certified diabetes educators and a social worker, is to help parents at the onset of the disease learn how to help normalize their child’s life at home, school and in the multitude of social settings and activities common to childhood.
“There is no cure for diabetes, but it can be controlled,” said Pam Suter, the center’s program manager. “We teach our patients how to do that and provide them with the education and support they need to live full, healthy lives.”
Hosting support groups, coordinating diabetes camps or making it realistic for patients to go on sleepovers or away with relatives for the summer are other important interests of the diabetes team. They help give kids a sense of belonging and teach them how to manage the disease in a variety of settings.
That was very important for Aimee and her mom.
“Our family was determined to help Aimee be a normal child,” Alison said. “And we all agreed we’d learn everything we needed to know.”
The Paynes helped establish a diabetes support group on the Peninsula. It meets monthly at CHKD’s Health and Surgery Center at Oyster Point in Newport News. “It’s very valuable and useful for parents and the children to talk about personal experiences with diabetes and not feel so alone,” Alison said.
Today Aimee manages her diabetes herself. And after a four-hour training session at the center, she has mastered the new insulin pump she started using this fall.
The pump delivers a constant level of insulin through a soft flexible catheter painlessly inserted just under the skin in her abdomen. Aimee calculates how much insulin she needs when eating or when her blood sugar rises above target levels, and she is able to adjust these doses when sports activities or her busy schedule dictates.
This mature Grafton Middle School sixth-grader really likes the flexibility and freedom the pump allows her. There are no limitations for physical activity, including bathing or swimming, and Aimee even sleeps with it.
“I can have snacks if I want, and I don’t have to leave class or stop other activities to give myself shots,” Aimee said. “It lets me be just like all the other kids.”
During a recent visit with Aimee, Dr. Rohn confirmed that her checkup and lab results clearly demonstrate her mastery of her new-found skills and technology.
“She’s doing very well with her disease,” he said.
Aimee and her mom know that learning is for life. And that CHKD is the place to learn from the experts.
“There were a lot of tears at first, but we’ve never felt on our own,” Alison said. “CHKD is just amazing. They make us feel like family. They hug us when we need it and give us space when we need it. And they’ve helped us know this is something we can all accomplish together.”
Drs. Reuben Rohn and Marta Satin-Smith practice with Children’s Specialty Group PLLC at CHKD.