Childhood diabetes is on the rise—and support from parents is key to helping children handle this disease.

“It’s important for families to be a committed and caring team” when coping with children’s diabetes, says Pediatric Endocrinologist Larry Deeb. “Parents should talk to their children about how they are going to be healthy. It’s not just the kids’ diabetes, it’s our diabetes.”

Diabetes overview

There are two types of diabetes that affect children. Children are more likely to have type-1 diabetes, where the body does not produce insulin, a hormone needed to turn food into energy. But an increasingly high number of children—particularly Latino and African-American children—are being diagnosed with type-2 diabetes, where the body stops using insulin properly. 

Warning signs for both type-1 and type-2 diabetes include elevated blood sugar, thirst, fatigue, lack of bladder control, extreme hunger, or unusual weight loss. Additional warning signs for type-2 diabetes include blurred vision, frequent infections, and tingling in the hands or feet. Uncontrolled diabetes can lead to blindness, kidney problems, and nerve damage.

If a parent suspects their child might have diabetes, they should talk with their child’s pediatrician. “The first question a parent should ask is if their child is overweight,” says Pediatric Endocrinologist Larry Deeb—risk factors for type-2 diabetes include obesity and lack of exercise.

Because the body of a person with diabetes does not use insulin properly, sugar levels can build up in the blood. A diet low in carbohydrates (whole grains are best) and high in protein and vegetables can help keep blood sugar levels stable. Type-1 diabetes is controlled through insulin shots. Type-2 diabetes can be controlled through diet and exercise, as well as insulin shots. Lifestyle changes for children with type-2 diabetes are critical, Deeb adds, because children today don’t get enough exercise.

Perrone: We are the best support for each other

Both Michelle Perrone and her son John, now 13, have type-2 diabetes. “We are the best support for each other,” she says. “It’s really important that the child knows they have support, not just someone telling them what to do.”

Perrone explained diabetes to John “on his level. I told him how the body works with sugar and how his wasn’t working properly, energy wasn’t getting into the cells.” She helps him check his blood sugar level every morning—he keeps his level consistent by eating more carbohydrates when it’s low, more protein when it’s high. He used to take insulin, too, but changes in diet, exercise, and vitamins helped “turn his insulin production around,” says Perrone.

Getting John to check his blood sugar can be difficult, says Perrone, but it helps to remind him that this is something he needs to do in order to have a long, healthy life. “We are [also] always making sure everyone around him knows what he needs to do, and they check up on him, in case he forgets,” says Perrone.

The family eats dinners without many carbohydrates, sometimes bread or rice on the side, and fruit for snacks. “If I grab a handful of chips, he tells me that’s not good for me,” Perrone says.

The hardest change for John since being diagnosed is that “he can’t grab an apple or a cookie” because he always has to be aware of his blood sugar levels, says Perrone. But it’s also a challenge when he eats away from home—“if he orders something that has too many carbs, he doesn’t eat it all. He tries to order [food with] more meat and veggies,” she adds.

The Perrone family has always been active—which is important for keeping type-2 diabetes under control. John likes to ride his bike and go hiking. But he needs to eat frequently on long hikes—and monitor his blood sugar for a couple days afterward, says Perrone.

Griffin: The whole family becomes involved

Michelle Griffin was in shock when she found out her son Cameron, 12, had type-1 diabetes. “I thought he had the flu,” she says. “I didn’t even know what questions to ask the doctor, but he reassured me that Cameron would be fine.” Griffin explained diabetes to Cameron by using a book for children about the disease. Doctors and nurses were also a great resource, she says.

“When a child is diagnosed the whole family becomes involved,” Griffin says. She recalls one day at breakfast, when she sat down with Cameron to check his blood sugar. “He looked at me and said, ‘I just want to eat my breakfast,’ and I realized he can never eat a meal without going through this ritual that diabetes requires.”

Another time Griffin worried when she accidentally gave Cameron his morning dosage of insulin in the evening. “I called the doctor from the restaurant we were at,” Griffin says. “I ended up just giving him more French fries.”

“As a result of Cameron's diagnosis,” Griffin says, “our entire family is making more conscious and beneficial food decisions. We eat a lot less bread and rice, have changed to whole grain pasta, and make dinner a meat or fish and vegetable combo.”

Diabetes doesn’t have to define who a person is, says Griffin, although sometimes it can take over. Cameron plays soccer and basketball, and does almost everything he would do if he didn’t have diabetes, she adds.

Stone: Seek out sources of support

“You have a responsibility to educate yourself,” says Jim Stone, whose 13-year-old son Andrew has type-1 diabetes. “Diabetes does not limit what your child can accomplish, [though] it can be a problem.”

“Connect yourself and your child to others with diabetes,” advises Stone. The family has been part of support groups in the community as well as active in Diabetes in California Schools (see below: Resources).

“You can’t do it alone,” adds Kathleen Fraser, a diabetes educator at UCSF. “It’s a challenging condition, [but] there are a lot of resources out there.” Support groups help empower children to manage their diabetes, she adds.

Parents work with schools

“Parents should know who will implement the doctor’s orders at school, how absences will be handled, how medication is stored, and who will care for their child,” says Charlotte Lanvers, attorney for the Disability Rights and Education Defense Fund. “If there is a school policy on locking up medication, it might make access to health care harder.”

At the beginning of every school year, Perrone meets with school officials about John’s diabetes and his 504 plan. The plan documents how the school will accommodate John—letting him have snacks in class, leave class when needed, and visit the school nurse once a day for a blood sugar test. Perrone also meets with school staff about diabetic-friendly food options in the cafeteria.

Perrone talks with John’s teachers, though sometimes problems come up. After a long run in PE class at the end of the day, John “got in the car and said he felt funny,” recalls Perrone. “I told him: It was your responsibility to stop and say, ‘Remember, I’m diabetic and I can’t do this. I need to have a snack.’”

“Our school district has been a great partner,” says Griffin. For example, Cameron’s 504 plan allows him to leave the room to test his blood sugar. “He’ll tell me anything that isn’t right and I’ll go to the teacher or administrator and make it right,” says Griffin. “When they run a mile at school, it’s great to know in advance because he’ll need less insulin.”

Resources

American Diabetes Association provides
information on diabetes, as well as parent mentors,  800-342-2383, www.diabetes.org/espanol

Latino Health Access provides diabetes education for children ages 7 to 20, 714-542-7792, www.latinohealthaccess.org

Disability Rights and Education Defense Fund provides sample 504 plans and diabetes management plans, 510-644-2555, www.dredf.org

Extra resources from the Children’s Advocate bulletin

• Children with Diabetes offers information and support for families of children with both types of diabetes.
  
  
• Juvenile Diabetes Research Foundation provides information and support for families of children with type-1 diabetes.
  
  
• Becoming an Advocate in the Schools, from the American Diabetes Association, offers tips to help families advocate for children with diabetes in schools and more broadly.
  
  
• Planet D offers information on diabetes for kids, including frequently asked questions, stories from other kids with diabetes, and a message board.
  
  

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