Living life to the fullest

Dane was just an infant when he was diagnosed with type 1 diabetes—among the youngest diabetic children his pediatric endocrinologist, Dr. Nina Jain, has ever treated. Now a thriving 4-year-old, Dane doesn’t let his diagnosis define him or deter him from childhood’s greatest pursuits.

Living life to the fullest click to enlarge Dane shows off his skills on a climbing wall.

When Chandra and Alan’s son, Dane, was 6 months old, he caught a bad respiratory virus. Chandra remembers waking him up from a nap and hearing his rapid, shallow breaths.

After seeing him, Dane’s hometown doctor in Pinehurst, N.C., recommended a trip to the local hospital, where some routine blood tests revealed confounding results: Dane’s blood sugar levels were off the charts. The doctors and nurses wondered if, in addition to a virus, Dane had diabetes.

“I was confused,” recalls Chandra. “I’d worked in the medical field as an ultrasound technologist for more than 13 years at the time, but I had never heard of a baby so young being diagnosed with diabetes.” 

Dane was transferred to a children’s hospital in Raleigh, where he stayed overnight. Doctors there concluded that instead of diabetes, Dane’s blood sugar may have sky rocketed due to the steroids they administered to open his airways.

“They thought it was just a fluke, and we were discharged from the hospital,” explains Chandra.

Six weeks later, at a routine check-up, Dane’s pediatrician decided to check his blood sugar levels just to make sure the incident in the hospital was isolated.

“They came back at 425 [normal range is 80 to 120], and the nurse said Dane was diabetic,” says Chandra.

Chandra was shocked. Alan, then a sergeant major in the U.S. Army, was deployed in Afghanistan at the time, and she felt frightened and overwhelmed having to face the diagnosis without him by her side.

“Luckily, my pediatrician called Dr. Nina Jain at UNC Children’s, and she saw us the next day in the Raleigh clinic,” says Chandra. “After that appointment, I packed my bags, and we drove to Chapel Hill for four days to learn how to keep Dane alive.”

Type 1 diabetes—or juvenile diabetes as it was previously known—is a serious and potentially life-threatening disease, which affects about five percent of Americans. It is the result of the immune system attacking the pancreas and destroying the cells that make insulin, which helps breakdown the sugars in food. Without treatment, it can lead to seizures, hypoglycemia (low blood sugar), and even coma. In infants and toddlers, the disease is hard to track and monitor, as blood sugar and activity levels in children so young fluctuate greatly throughout the day.

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Dr. Nina Jain with a patient. Click to enlarge.
Nina Jain, MD, director of UNC Children’s diabetes program, has been a pediatric endocrinologist at UNC since 2008. Although about half of her patients have diabetes, she’s seen few diagnosed in infancy like Dane. As a medical provider, Jain says the challenge to treating kids like Dane is to not only keep them healthy but to teach the parents and the child (as he or she gets older) how to manage the disease in a way that fosters a normal childhood.
 

For Chandra and her husband, who by happenstance returned from active duty the day Dane was admitted to N.C. Children’s Hospital, diabetes meant learning how to help Dane regulate his blood sugar and symptoms without limiting their family’s active life.

“It was grueling at first,” recalls Chandra, who moved Dane’s crib back into her bedroom as the family adjusted to a new rhythm of checking Dane’s blood sugar 15 to 20 per day with finger pricks. She remembers Dane needing up to eight insulin shots per day to adequately manage symptoms in those early months after diagnosis.

“It’s hard, because you never let your guard down,” says Chandra.

But Chandra credits Dr. Jain with helping her see that diabetes is a manageable condition, not something to fear.

“When parents act like Chandra and Alan are so involved and so quickly learn how to effectively manage their child's diabetes, we see great results,” says Dr. Jain.

Dane with "Dexter." Click to enlarge.
Dane with 'Dexter' clad in a Ninja Turtle bandage. Click to enlarge.
Now a thriving 4-year old, Dane practices Jiu-Jitsu on Tuesdays and Thursdays, attends preschool, and loves to rock-climb. In March, he started using a continuous glucose monitor to track trends in his blood sugar. Dane calls the device Dexter; his mom calls it a game-changer. 
 

“Dane can’t always tell me when his blood sugar feels low, so the glucose monitor is a quick way to predict shifts for us,” says Chandra.

Dr. Jain, whose clinical interests include using technology in diabetes care, says patients like Dane are success stories. She sees him at clinic appointments every three months and will continue to see him at regular intervals until he enters adulthood, when he will choose an endocrinologist specialized in treating adult patients. 

“UNC is unique in that we have the only comprehensive transition program for teenage and young adult diabetics in the area,” says Dr. Jain. “We work closely with patients with diabetes through the college years to successfully help them transition to adult medicine.”

With college a long way off, Chandra is grateful for Dr. Jain’s expertise. She reflects that the last three years have taught her a lot about herself — and her son. When asked, she says she would tell parents of children newly diagnosed with diabetes that the disease is nobody’s fault and that the diagnosis doesn’t mean living a limited life.

“Remember to let your kid be a kid first and foremost, [and have] diabetes second,” offers Chandra. “Let them enjoy everything being a kid entails … sports, birthday parties, holidays … Dane has diabetes, but I will never let it slow him down.”

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