Managing type 1 diabetes requires a 24-7 commitment, and that can be overwhelming. But it does get easier, and there is lots of help available.
Maybe you're frightened. Or exhausted. Or worried that you won't be able to figure out the equipment or the insulin or how to get your child to sit still for another finger stick. When your kid is diagnosed with type 1 diabetes (T1D), the learning curve is steep -- but manageable. Here is the short version of what's going on:
- Your child's pancreas no longer produces insulin, a hormone your cells use to turn sugar (or glucose) into energy.
- Now, your child must take insulin, either by injection or through a pump attached to the body, to keep blood sugar levels in range in efforts to avoid serious long-term complications such as kidney failure, heart disease, lower-limb amputations, and blindness.
- This disease has no cure, but there are great ways to manage it (and amazing technologies on the horizon).
- For now, you'll be checking your kid's blood sugar several times throughout the day and night. You'll do this by taking a drop of blood from a finger poke, and placing it on a glucose meter.
- You'll use each sugar result as a guideline for how much insulin your child needs to eat or how to adjust for exercise to simply keep that blood sugar level in the target range.
- A child with T1D requires insulin through injection or a pump attached to the body. Both the shots and the site changes for the pump, which happen every two to three days to avoid infection and to maximize insulin absorption, can be painful at first, but kids generally get used to it within a few weeks.
- Until then, you can use numbing cream called EMLA, or an ice cube, plus distractions such as a special TV show or a stuffed animal to hug. There are even special distraction products to press near the injection area, such as Buzzy, a small vibrating device that has an ice pack and looks like a cartoon bee.
There are about three million Americans with the same disease -- 15 percent of them are children or adolescents, says JDRF, formerly known as the Juvenile Diabetes Research Foundation. Each year, more than 15,000 kids are diagnosed with T1D in the U.S.
Parents' biggest worries
When Fred Thiele's two children, Aiden and Giselle, were diagnosed with T1D, he and his wife, Bre, were heartsick. "We just kept wondering what we did wrong," says Thiele, of Niwot, Colorado. "Did we give them cow's milk too early? Were there environmental factors that came into play? You can drive yourself crazy with 'what if' scenarios. And we did. Finally we realized we had to stop. It wasn't healthy."
Parents, families and children should never feel guilty about a T1D diagnosis, says Parents advisor Lori Laffel, M.D., M.P.H., chief of the Pediatric, Adolescent and Young Adult Section at the Joslin Diabetes Center in Boston. Parents did not do anything that caused the disease, and can't do anything to prevent it.
Focus on learning
"Work closely with your health care team and use the state-of-the-art care and medications and technologies that are available now," Dr. Laffel says. "While we have no cure, we have very effective treatments."
That health care team will usually include your doctor, an endocrinologist (a specialist in diseases like diabetes), a dietician, a diabetes educator, and sometimes a social worker or psychologist to help your family adjust to the diagnosis and new routine. They are all there to teach you how to check blood sugar levels, use insulin, and manage the family diet.
Do those things well, and your child with T1D will be fine. "As long as you keep your blood sugars normal, you will not have complications," says JoAnn Ahern, APRN, manager of the pediatric diabetes program in Danbury Hospital, part of the Western Connecticut Health Network. Many parents become fatalistic, she says. They fear, for example, that a grandfather with T1D died young, so their child will too. But that's untrue. "If blood sugars are managed, a child has the same life expectancy as anyone else."
"Diabetes in childhood is a family disease," says Dr. Laffel. That means the biggest change will take place in your kitchen. The food in your house must now be healthy for a person with T1D and include fresh fruits and vegetables, proteins such as eggs and fish and meats, and multigrain starches (brown rice, whole grain breads and pastas). Of course there are times that special treats can be included; work with your health care team to learn carbohydrate counting and other approaches to healthy eating. And the changes should apply to the whole kitchen, not just in one cupboard for your child with T1D. "You can't say everyone will drink soda, but one kid has to drink water," insists Ahern. "Everyone eats fruits and vegetables. Everyone avoids sugary drinks. You're all in this together."
Some siblings may resent this change in diet and exercise. But it's important to convince your family that doing this keeps the whole family healthy. Sometimes parents themselves resist diet change, insisting, for example, to still eat white rice instead of less carb-heavy brown rice.
Ahern is against this. "Make it brown rice, or no rice. You can't serve one thing for your child, and something else for the rest of the family. It doesn't work." Remember: This is not a choice. It's a necessary change.
The changes T1D brings are a lot to handle, says Joseph Hedrick, Ph.D., senior scientific director of cure therapies at JDRF. "Be realistic about what you can do, and what your child can do, and don't be afraid to ask for help," he says. Especially in those first few months, seek advice from doctors, other affected families, and organizations such as JDRF and the American Diabetes Association.
While every family is different, be assured: Kids will adjust. If you stay firm on the changes at home, your family may surprise you with their adaptability. Especially your child with T1D. "They'll know they're different from their friends," says Dr. Hedrick, who himself grew up with rheumatoid arthritis. "But children may be more adaptable than even their parents in managing this disease."
Books About Diabetes
Understanding Diabetes by Dr. H. Peter Chase and Dr. David Maahs
Conquering Diabetes: A Cutting-Edge, Comprehensive Program For Prevention And Treatment by Dr. Anne Peters.
ADA Guide To Raising A Child With Diabetes by Jean Betschart Roemer.
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