When a child learns they have type 1 diabetes, it's literally life-changing. "This is a condition that has to be managed 24 hours a day, seven days a week," says Steve Winer, co-chair of the JDRF Online Diabetes Support Team. That’s a lot to take in for you and for your kid. While frequent finger pricks and insulin injections might be top of mind, it's smart to also pay attention to your child's emotional needs. Here are some of the feelings your child might have and how you can help.
Having type 1 diabetes can be scary, especially when you start hearing about all the potential long-term complications, such as blindness and a shorter life span. How can you ease their worries while being realistic? Consider getting a mental health expert on board as early in the process as possible.
"A lot of families find this can be helpful at diagnosis to discuss how their lives have changed,” says Debbie Butler, associate director of pediatric programs at the Joslin Diabetes Center. Counseling can also helpful when the child or teen seems burned out or overwhelmed, or if there’s diabetes-related conflict going on in the family.
Peer support is important, too. You can help your child find new friends with type 1 by seeking out diabetes camps and local events in your area. Check with your diabetes clinic or agencies such as JDRF.
If your child worries about what might happen to their body in the future, remind them that a lot of the statistics are outdated and based on old medicine.
Try not to use fear as a motivating tactic, says Wendy Satin Rapaport, PsyD, adjunct professor of medicine at the Diabetes Research Institute, University of Miami Medical School. Telling a child that they could die or end up blind if they are lax about their treatment regimen could backfire.
It's not unusual for a child to feel guilty or embarrassed about having diabetes. "I remember another mom telling me that when her son left the hospital he said, 'Mommy, I promise I'll be a good boy,'" says Arianna Lamosa, a volunteer for the Diabetes Research Institute Foundation’s PEP (Parents Empowering Parents) Squad. "He thought he was there because he was behaving badly, and that if he behaved the disease would go way. That broke my heart."
You may have to remind your child that sometimes bad things happen to good people. It also helps to encourage your child to be open about their condition so they understand that having type 1 diabetes is nothing to be embarrassed about.
Lamosa says that her daughter, who was diagnosed at age 3, gets her blood sugar tested by a nurse right in her classroom. "I don't make them pull her out, because I want her to know that there's nothing to be ashamed of," she explains. "People need to see you advocating for your own cause."
Feeling Left Out
It's important to remind them that they can do just about anything other kids can do, though you may have to take some extra precautions. Winer says he and his wife allowed their daughter, who was diagnosed at age 11, to attend birthday parties, sleepovers, and out-of-town field trips.
Lamosa also tries to maintain a sense of normalcy for her child. She lets her go trick-or-treating on Halloween, and she uses a fun tactic for dealing with all that candy. "When we get home she picks 10 or 15 of her favorites, and we save those to treat low blood sugar," Lamosa says. "The others we leave for the 'candy fairy.' She picks them up that night and leaves a toy or money in return."
Allowing your child to be as active, while keeping the lines of communication wide open, is also a good way to reduce the chances of them acting out. Rapaport urges parents to always validate their children's feelings and thank them for being honest, even when it comes to sensitive topics like skipping blood sugar tests or experimenting with alcohol (people with diabetes need to be extra cautious).
Mental Health Problems
You can expect your child to have a wide range of emotions. You may able to help them navigate these feelings by yourself or with the help of a supportive health care team. But sometimes more serious issues crop up, which means you'll need to get extra help.
People with diabetes are about twice as likely as others to suffer from depression. "It can be very overwhelming to manage diabetes, and individuals can become very burned out," Butler says. And sometimes it’s hard to control. “Even if you are trying hard to manage your diabetes, you can still experience out-of-range blood sugars, which can be very frustrating."
Fear can lead to depression, as can having to spend time in the hospital, Rapaport says.
Depression can lead to physical problems such as poor glucose control and diabetic ketoacidosis, so it's important to take it seriously and act swiftly.
Parents should keep an eye out for warning signs, which might include changes in sleep habits, appetite, and mood. Your child might also lose interest in activities they once enjoyed, such as spending time with friends, and seem more withdrawn.
If you think your child has become depressed, talk to your doctor as soon as possible and get a referral to a mental health expert if you're not already working with one.
Both boys and girls with type 1 can have eating disorders. Girls and young adult women with type 1 are about twice as likely as other girls to have one. And anywhere from 7% to 35% of girls and women with type 1 appear to have a "sub-threshold" eating disorder, meaning they meet some but not all of the criteria for this problem.
"Kids with diabetes are more preoccupied with food because they have to be," Rapaport says. Even though there are no "forbidden" foods, someone with type 1 must watch what they eat and drink constantly and adjust the insulin dose accordingly. People with diabetes also must carry food with them at all times in case their blood sugar levels drop too low.
Some teens with type 1 might develop an eating disorder in part because they're struggling to keep some control in their lives or as an act of rebellion against what they view as a restrictive lifestyle. Others might have a poor body image, especially if they put on weight from taking insulin.
An eating disorder in someone with type 1 diabetes is sometimes referred to as "diabulimia." While a teen might simply avoid eating, many realize that they can eat what they want and still lose weight if they don't take insulin. The results are that they slim down, but they risk dangerously high blood sugar levels, nerve damage, kidney disease, and many other serious complications.
One red flag is blood sugar levels that become very high. It's smart to monitor them regularly, even in teens who are largely responsible for their own care. Others are a change in eating habits; an obsession with body image; frequent thirst and drinking; and secrecy about blood sugar levels, insulin, and food intake. If you spot any of these in your child, call the doctor right away and ask for a referral to an eating disorder specialist.