Angela Loucks remembers Dec. 11, 2011, as a day that would change her daughter’s life forever.
When the doctor at Peninsula Children’s Clinic told her Chloe, then 4-years-old, had Type 1 diabetes and was insulin dependent, Loucks broke down in tears.
Chloe took the news a little better than her mom.
“She leaned over and put her hand on me and told me it’d be OK,” Loucks said.
And it has been OK for the Loucks family, they say.
At first, Loucks said she thought Chloe’s symptoms of extreme thirst and hunger were part of growing up but the diagnosis that their daughter now had a chronic condition was a culture shock. In time, lifestyle changes came and the Loucks family including dad Larry and sister Emily began to make healthier food choices in support of Chloe.
Being diabetic hasn’t taken away her childhood either. Chloe still rides her bike, jumps on the trampoline, goes to birthday parties and trick or treats on Halloween. Treats are just eaten in moderation.
“It’s just a way of life for her now,” Loucks said.
“I don’t really know anything different,” Chloe said.
On and off
Traveling for care is a way of life for many young diabetics, too — a functional reality for many local diabetics. The Olympic Peninsula has been without an endocrinologist, a doctor specializing in hormonal imbalances in the endocrine system, for more than a year.
Dr. Josh Jones, chief physician officer for Olympic Medical Physicians, said his group is not recruiting a new endocrinologist for a number reasons, but mainly because of their rarity.
“It’s difficult to have a solo, lone doctor of any kind of specialty of any kind of coverage,” Jones said. “There was plenty of need. We weren’t able to create a program and the clinical infrastructure around the endocrinologist.”
Chloe and her family travel to Seattle Children’s every three-four months to see an endocrinologist while others travel to Swedish Pediatrics or Mary Bridge Children’s in Tacoma.
Dr. Jeff Weller, a pediatrician at Peninsula Children’s Clinic, said bringing in a pediatric endocrinologist is even more rare.
“It’s nearly impossible to have sub-specialists in a rural area,” Weller said. “All sub-specialists work at a tertiary care center like Mary Bridge.”
To offer a local option, Seattle Children’s sends a team including a pediatric endocrinologist to Peninsula Children’s Clinic one day every three months to meet with children with diabetes.
Weller said that interval matches routine appointment schedules in bigger areas.
Casey Vass of Sequim has five children and her youngest Kylus, 2, has been a diabetic for about a year. They met with Seattle Children’s endocrinology team in late February in Port Angeles, but Vass said there was such a backlog of patients they waited for more than four hours.
Vass said it’s easier for her family to travel to Seattle Children’s than wait that long again.
“I want him to be monitored and know we’re doing what we need to be doing,” she said.
“I can’t see putting my family through this every four months.”
She’s traveled to Seattle for various diabetes education classes and appointments and since February she’s called the clinic twice about filling a prescription and advice on dealing with the stomach flu.
“He’s growing so fast that we’re adjusting his (insulin) numbers every time we go in,” she said.
Time is the hardest part of managing her son’s diabetes, Vass said.
“It’s so time-consuming,” she said. “It’s all day with all the food and medical and insurance stuff.”
Sadie Crowe of Port Angeles has similar struggles with diabetes on the peninsula.
Crowe, 38, grew up a Type 1 diabetic in Sequim and her daughter Roslyn, 7, has lived with the autoimmune disease for four-plus years, too.
“When Roslyn was diagnosed, we really considered whether we should stay here,” Crowe said.
“They don’t provide the level of care we need for Type 1 diabetes here.”
Both mother and daughter wear insulin pumps and Roslyn sees a doctor at Mary Bridge Children’s every three months.
“It would be life changing for us if we didn’t have to drive to Tacoma for care,” she said.
Roslyn sees local physicians for immunizations, colds and other basic care but Crowe said “when a diabetic is sick you get a little sicker.”
“We’ll call the endocrinologist sometimes because if we can’t get the diabetes under control, then we can’t stop the virus,” she said.
On average, Roslyn has traveled about once a year to Tacoma for Mary Bridge’s pediatric intensive care unit, Crowe said.
The total number of diabetics, Type 1 or 2, isn’t known on the Olympic Peninsula, but the Juvenile Diabetes Research Foundation estimates there are more than 1.25 million Americans with Type 1 diabetes.
The Centers for Disease Control and Prevention estimates about 26 million Americans have diabetes.
Type 2 diabetes, usually diagnosed in adults, is a metabolic disorder where a person can still produce insulin but cannot use it as well.
Vickie Everrett, supervisor of nutrition counseling and a diabetes educator for Olympic Medical Center, said they see and treat diabetes as an epidemic.
“We want to change the mindset of people,” she said.
Through her programming, she sees about 600 people annually for diabetes education — with about 30 of those Type 1.
“It isn’t just, ‘You’ve got to lose weight and move more,’” Everrett said. “It’s really sitting down with them and talking with them about how they fix food, what kind of food access they have and what are their physical abilities in order to get their best medical care.”
Some of the things they cover includes diabetes self-management and self-training, counseling services, and they offer a monthly support group from 6:30-7:30 p.m. the fourth Tuesday of each month at Olympic Memorial Hospital.
Everrett said she typically doesn’t work with children under 18 and that patients are usually referred by primary care physicians for diabetes assistance.
Weller said when juvenile diabetics are diagnosed they are sent to a tertiary center like Seattle Children’s to be stabilized and work with a diabetes educator.
Everrett said they’ve implemented a diabetes prevention program that starts again in August and is covered by Medicare in 2018 for patients who participated in the Center for Disease Control’s diabetes program the past three years.
While options may be limited, physicians like Jones and Weller want to look for more collaboration.
“We can leverage some of our electronic health records to help primary care care doctors provide better care especially around diabetes,” Jones said.
Everrett agrees, saying there are a lot of people with diabetes and with early risk factors such as being overweight, a more sedentary lifestyle and those older than 60 who need enhanced support.
“That defines a large part of our population,” she said. “But their providers have to refer them to the (diabetes education) service.”
Even though diabetics may prefer to see a specialist, most local diabetes care is not provided by an endocrinologist, Jones said.
“For the chronic ongoing care, their care will live in their primary care provider,” he said.
Both types of diabetes can be managed by a primary care provider, Jones said, and in more complicated cases they’ll consult a specialist.
Weller said tertiary centers are good about having phone access and Olympic Medical Center officials are looking to grow telemedicine offerings through secure, video-to-video in the future.
Peninsula Children’s Clinic’s recent partnering with Olympic Medical Physicians, also provides a lot of opportunities for growth and opportunity, Jones said, but there are no current plans regarding juvenile diabetes aside from current operations.
Traveling to Seattle Children’s takes a full day every three months for one of Chloe’s appointments, Loucks said.
But Chloe looks at the appointment as a fun trip, she says, and only dreads a scheduled arm poke for shots.
“For me, what’s more important is that she is comfortable and everything is a good fit rather than the cost of gas and traveling for a whole day,” Loucks said.
After four-plus years of a strict diet, finger pricks and insulin injections through her pump, Chloe remains hopeful for a cure.
Once a year, she and her family make and sell baked goods at her great-grandmother’s garage sale with proceeds benefiting diabetes research.
“I’m very hopeful,” Chloe said.
For more information on Olympic Medical Center’s Diabetes Prevention Program, call 417-7125.
Reach Matthew Nash at firstname.lastname@example.org.