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Sometimes it must feel like living with the enemy — both for teen-agers with diabetes and their parents.
But for Sandy Puczynski, PhD, chair of research for the Juvenile Diabetes Foundation and director of research and evaluation for the Medical College of Ohio in Toledo, helping her 15-year-old daughter negotiate her way to adulthood has carried with it some special challenges. Together they’ve found some creative ways to meet those challenges.
Michelle was diagnosed with diabetes before she was a year old.
Perhaps Michelle’s success in managing her diabetes as a teen-ager comes from having to deal with it since her earliest years. "You have to teach these children early on how to make good decisions," says Puczynski.
Life went smoothly, if not easily, until Michelle reached puberty and her blood sugars started to do a roller coaster, particularly in the few days before her menstrual period.
"We started to mark her sugars down on a calendar, and eventually we began to see a pattern," Puczynski says. "Sometimes her efforts to maintain her blood sugar control are very frustrating for her. I just keep reminding her that these changes in hormone levels are something she can’t see and can’t control."
Michelle hasn’t been rebellious about her diabetes "because she knows how important it is," says Puczynski.
Yes, Michelle hates her diabetes at times, "But I say that’s OK. Diabetes is one thing in her life we will never fight about."
Having a mom who understands exactly what is going on is a plus for Michelle, but Puczynski says living with a teen-ager with diabetes takes more understanding and support than medical know-how. "We may fight about anything else, but we’ll never fight about diabetes."
As Michelle gradually began to want more independence, Puczynski was assured her daughter was ready to handle additional responsibilities. Yet Michelle knows she has a strong support structure. "Our family feels we share the disease with her. She’s not alone with the disease . . . ever," Puczynski says.
When Michelle first wanted to go to overnight events with her friends, Puczynski was anxious and called the parents hosting the sleepover several times. "It’s a matter of being in touch with your child and taking your cues from them. When I am overbearing, she’ll call me on it," says Puczynski.
Trust is key to building that budding independence, she says, and that trust empowers the child to an even greater sense of responsibility.
Michelle’s now an active teen-ager, in love with soccer, a graduate of diabetes camp, and attending regular summer camps. "I am comfortable with her going away because I know she can handle it," Puczynski says. In fact, at the time Puczynski spoke with Diabetes Management, Michelle was away at summer camp for several weeks. It’s a sign, her mother says, of how much confidence everyone feels in Michelle’s ability to take care of her diabetes.
Yet, while Puczynski knows Michelle can handle her diabetes, sometimes the teen-ager just needs a vacation. But it’s up to her daughter to make sure things are still being covered.
"If she’s had a big soccer game and she’s tired, she may ask me to test her during the night. I think that is very responsible for a 15-year-old," Puczynski says.
And then there are other concerns all parents face, whether their children have diabetes or not, such as issues with kids and alcohol. But this mother needs to add to the lessons about alcohol responsibility.
"I told her never, ever drink without having food and understand that alcohol works differently; it actually lowers the blood sugar level, so she needs to be aware of that."
Puczynski shares a couple of other rules that Michelle and her family have agreed upon, even if Michelle can be a bit reluctant, at times, to do her part:
-Blood sugar monitoring is not optional, although it can be negotiable. The bare minimum, no matter what: bedtime testing.
-No sleeping late: The rule in the Puczynski household is that Michelle must get up at the usual time (even in the summer or on weekends when she wants to sleep in), check her sugar, inject insulin, and eat breakfast. Then she can go back to bed if she likes.
-The next challenge: Driving. When Michelle is 16, she’ll want her license. The non-negotiable rules are Michelle must be in excellent glycemic control before she gets into the car and she must have her meter and glucose with her at all times. If she doesn’t comply with these rules, she will not be permitted to drive, says Puczynski. "I am very strict about this. She could endanger other people’s lives."
But Puczynski says she isn’t really worried about Michelle’s ability to cope, abide by the rules and stay healthy. "I’m lucky. I have a really good kid."
[For more information, contact Sandy Puczynski at (419) 383-5507.]