Life changes when a child learns he or she has type 1 diabetes. “This disease needs to be managed 24 hours a day, 7 days a week,” says Steve Winer, co-chair of JDRF’s online diabetes support team. This is important for parents and children alike. While frequent blood glucose testing and insulin injections are important, it’s also important to be aware of your child’s emotional needs. Here are some of the feelings your child may be having and what parents can do to help.
Having type 1 diabetes can be scary
Having type 1 diabetes can be frightening, especially with the knowledge of all the potential long-term complications, such as blindness and a shortened life span. How can you ease the patient’s fears in a realistic situation? Consider involving a mental health professional in treatment as early as possible.
“Many families find it helpful to discuss the changes that will happen in their lives,” says Debbie Butler, associate director of the Joslin Diabetes Center’s pediatric program. Counseling can also be helpful when a child or teenager is feeling tired or overwhelmed, or when there is conflict in the family related to diabetes.
Peer support is also important. Parents can help their child find a type 1 diabetes buddy by finding diabetes camps and local events in their area. Check with a diabetes center.
If your child is worried about what might happen to him/her in the future, remind him/her that many of the statistics are outdated and on medications from the past.
Try not to use fear as a motivational strategy, says Wendy Satin Rapaport, a professor of medicine at the University of Miami School of Medicine’s Diabetes Research Institute. Telling a child that they could die or end up blind if they don’t follow a strict treatment regimen can backfire.
Child feels guilty or embarrassed about having diabetes
It’s common for children to feel guilty or embarrassed about having diabetes. “I remember a mom once telling me that when her son left the hospital, he said, ‘Mom, I promise I’ll be a good kid,'” said Arianna Lamosa, a PEP (Parental Rights) volunteer with the Diabetes Research Institute Foundation. (Lamosa) said. “He thought he was going to the hospital because he was behaving badly and that the disease would go away if he could just behave. It made me feel heartbroken.”
Parents need to remind their children that sometimes bad things happen to good people, too. Encouraging your child to open up can make him or her realize that having type 1 diabetes is not something to be ashamed of.
Lamosa said her daughter, who was diagnosed with diabetes at age 3, would have her blood sugar measured by a nurse in the classroom. “I wouldn’t let them call the child out for the test because I wanted the child to know there was no shame in it,” she explained. “Other people need to be shown what the child is holding on to.”
Children with the condition can feel left out
It takes only a few extra precautions to show a child that he or she can do whatever he or she wants to do, just like everyone else. Wenner said his daughter was diagnosed at age 11, and they allowed her to go to birthday parties, spend nights out and go on field trips.
Lamosa also tries to allow her child to live a normal life. She lets her children go trick-or-treating before Halloween and uses special strategies to exchange candy. When we get home, we let the child choose 10 or 15 favorite candies, which we use for hypoglycemia,” LaMossa said. The rest of the candy we leave for the ‘candy fairy. That night she would pick up the candy and leave toys or money in return.”
Engaging children in sports and communicating positively can help reduce their feelings of isolation. Rappaport has parents encourage their children to express their feelings and appreciate their honesty, even when it comes to sensitive topics like forgetting to take a blood sugar test or drinking alcohol (people with diabetes need to be extra cautious).
Children with diabetes can experience a wide range of emotions
Children can have a wide range of emotions. Parents can help their children understand these feelings in person or with their health care team. However, when more serious problems arise, additional help is needed.
Children with diabetes are prone to depression
People with diabetes are twice as likely as others to develop depression. “Controlling diabetes can be very difficult, and the child can be very tired,” Butler said. Sometimes the condition is difficult to control. “Even with efforts to control diabetes, blood sugar may still be out of the normal range, and that can be frustrating.”
Fear can lead to depression and even the need to go to the hospital for treatment, Rappaport said.
Depression can lead to physical problems, such as poor blood sugar control and diabetic ketoacidosis, so depression needs to be taken seriously and action taken quickly.
Parents should watch for warning signs, including changes in sleep habits, appetite, and mood. Children may also lose interest in activities they once enjoyed, such as spending time with friends. If not already working with a mental health professional, make a referral to a mental health professional.
Patients are prone to “bulimia”
People with type 1 diabetes may develop an eating disorder. Girls and adult women with type 1 diabetes are twice as likely as other girls to have an eating disorder. 7%-35% of girls and adult women with type 1 diabetes have a “subthreshold” eating disorder, which means that they have some symptoms of an eating disorder.
Rapapol said, “Children with diabetes need to pay more attention to their daily diet.” Even if there are no “off-limits” foods, people with type 1 diabetes must constantly monitor their diet and adjust their insulin doses accordingly. It’s also important for people with diabetes to carry food with them in case their blood sugar levels get too low.
Some adolescent patients may develop an eating disorder, in part because they have difficulty controlling their lives or rebelling against what they perceive as a restrictive lifestyle. Other reasons may be poor outward appearance, especially if the insulin is causing weight gain.
Eating disorders in people with type 1 diabetes are sometimes referred to as “bulimia”. Although some adolescents may simply not eat, many realize that they can eat the foods they like, not use insulin, and still lose weight. The result is that they lose weight but are at risk for high blood sugar, nerve damage, kidney disease, and many other serious complications.
Very high blood glucose levels are a serious warning sign. This is when blood glucose levels need to be monitored regularly, even in adolescents who are able to care for themselves. Other warning signs include changes in eating habits; too much attention to outward appearance; frequent thirst and drinking; and secrecy about blood glucose levels, insulin, and food intake. If you notice any of these in your child, consult your doctor immediately.