A child and parents cope with diabetes
WILLIAMSTOWN -- In the middle of the night, Noelle Dravis half wakes to taste something sweet. Her mother sits on her bed, feeding her a spoonful of maple syrup. It could save her life.
When Noelle was 4, she was diagnosed with Type 1 diabetes.
"It's a constant worry," said her mother, Rebecca Dravis, who checks her blood sugar every night. "Parents tend to worry about their kids even when they are healthy. It's frightening to think what could happen."
Noelle, 7, is among the 5 to 10 percent of diabetes patients with Type I diabetes, which commonly appears in children. To regulate her blood glucose levels, insulin must be injected into the body, as in Type 2 diabetes.
But with Type 1 diabetes, an autoimmune disease, the pancreas does not produce insulin -- unlike Type 2 diabetes. The blood glucose level must be constantly monitored, and failure to regulate it may result in serious injury to vital organs, coma or possibly death.
Raising a child with Type 1 diabetes can be fraught with challenges for parents.
Rebecca knows. Should Noelle attend camp like her friends?
In the Berkshires, there are no diabetes specialist in pediatrics: Would she be better off living in an urban area?
There's also the daily rigor of monitoring blood sugar. Noelle must know how many carbohydrates is in everything she eats -- she said her favorite food is cheese, which has no carbohydrates.
Noelle, her parents and a school nurse check her blood glucose levels with a prick of her finger six to 10 times a day.
Dr. Holley Allen, chief of pediatric endocrinology at Bay State Children's Hospital of Springfield, said it's common for someone with diabetes to check their blood glucose four to 10 times a day.
When doctors identified Noelle as having Type 1 diabetes, she had a blood glucose level of 550, because her pancreas wasn't producing insulin, Rebecca said. The normal blood glucose level is 70 to 120.
When her glucose is low, Noelle said, "I feel like I want to sit down and lay down and stay there for my life. I feel really droopy."
Her mother is constantly on alert for the signs. But she doesn't want these concerns from preventing Noelle from enjoying a full life.
Allen said diabetes will not affect development as long as insulin shots are taken -- but she said family bonds can be challenged because of the demands.
"It's incredibly demanding, and there are no vacations from it," Allen said.
Although children may not want to let their friends know, Allen said families that embrace diabetes as the "new normal" and don't shy from talking about the condition are often better off.
"It's better if they don't treat it as a disability that limits activities, but rather they treat it as more of a challenge," Allen said.
The whole family should work in partnership.
Every month Dravis writes a monthly online column on the Hilltowns Families website, and she's clearly a concerned mother. She writes about the lack of pediatric diabetes specialists in the rural Berkshires, and she feels the only person she can trust to baby-sit Noelle is her mother, who has Type 2 diabetes.
In a column, Dravis recalls a fight with her husband about whether Noelle should take responsibility for ensuring her blood is monitored. He argued that she was too young to monitor her glucose levels.
Dravis has since talked with doctors who told her a child shouldn't take too much responsibility too soon, because she can burn out on taking care of herself.
In other columns, Dravis describes reluctantly giving her daughter a cell phone at 6 for emergency purposes. She has argued with a local doctor who refused to talk to her daughter's pediatric endocrinologist while treating her for a serious condition.
Asked whether she feels confident handling Noelle's diabetes after three years, Dravis responds, "Never."
"As much as I think she's a mature kid for her age, she doesn't want to be different from other kids, and she doesn't want to miss a play date because of the diabetes," she said.
While her mother fears the worst, Noelle is worried about fitting in with her peers. After someone noticed her insulin pump at school, Noelle nervously kept walking despite repeated questions. She became frustrated with her best friend after she told another student about the insulin pump.
"I don't want the whole world to know about it," Noelle said. "I want it to be private.
A mother's passion won't allow Dravis to relax. On a recent Thursday afternoon though, Dravis had a momentary reprieve as she helplessly laughed when Noelle said "I am not a brat," when her glucose level is high. "I am a rat. And I scurry."
To reach John Sakata:
email@example.com, or (413) 496-6240.
On Twitter: @jsakata
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