“When I found out my daughter had type 1 diabetes, I was devastated.” “I couldn’t sleep, I was angry, I felt guilty, and most of all, I was frightened and overwhelmed, unsure how we were going to be able to cope.”
If your child was recently diagnosed with type 1 diabetes, previously known as juvenile diabetes, then you probably have experienced many of these same emotions. These reactions are entirely normal, and you are not alone. Educating yourself about the disease – and helping your child understand it and its treatment – will help you both adapt to this new reality.
Type 1 diabetes is a chronic disease in which the immune system destroys the beta cells within the pancreas that produce insulin, a hormone that regulates the proper use and storage of glucose (a type of sugar), which the body uses for energy. As a result, glucose backs up in the bloodstream, causing increased blood sugar levels. Those affected must receive insulin injections to survive. As yet, the disease has no cure, and no definitive cause, although genetics and exposure to certain viruses may play a role.
Managing diabetes is key to maintaining health. If left unchecked, it can cause serious long-term complications, including damage to the cardiovascular system, kidneys, nerves, eyes, and blood vessels.
Symptoms of type 1 diabetes usually appear suddenly and may progress rapidly. You should seek medical attention for your child if you notice the following:
Your child should know that they are not to blame for the condition and that nothing could have been done to avoid it. You should also let him or her know that, with the aid of health professionals, school staff, and their family, he or she can manage diabetes and live a healthy, active life.
Your child’s age and maturity will determine how diabetes is managed. You, your child, school staff and caregivers will need to learn how to give insulin injections or use an insulin pump, count carbohydrates, and check blood sugar levels. Children must understand the importance of regular blood sugar monitoring and know the target range, symptoms of high and low blood sugar, and what they need to do to correct abnormal sugar levels. Usually, until children reach their mid-teens, the adults involved in their care should share responsibility for blood sugar checks and insulin injections. Given the amount of time a child spends in school, communication with the school nurse and other school staff is critical. Eventually, as they grow older, children will learn that vigilantly monitoring their sugar levels and diet is key to fully participating in daily activities with their friends.
To successfully manage diabetes, your child will need regular checkups at least every three to six months, as well as periodic tests, and he or she should follow a treatment plan developed with the help of his or her health care team. Be sure to discuss the following with the team:
One of the major hurdles for both you and your child is that diabetes treatment requires using a needle. However difficult this may seem at first, it will eventually become routine. Fortunately, new devices that make blood glucose monitoring and insulin injections easier and less painful are being developed all the time.
While diabetes requires consistent medical care and monitoring, how children define themselves in relation to their disease will have a major impact on their emotional well-being and ability to manage the condition. Children with diabetes may experience anger about being saddled with the disease, have poor self-esteem or body image, be fearful about treatment errors or dying, or worry about how others will view them.
For your child to become a mature, independent individual who feels optimistic about life and in control despite the demands of diabetes, you will need to help him or her address the emotional impact of the disease. The support of a mental health professional, diabetes nurse educator or other community resource may be useful. For one mother, a club designed specifically for diabetic kids was a lifesaver:
“The Sugar Free Gang support group was invaluable. It’s a club you never want to have to be a member of, but when you need it, it provides great support – a place for my daughter to laugh about the challenges of diabetes and … to develop leadership skills with her peers. I could not have done it without them.”
Your child’s health care team will be your primary resource for coping with diabetes, but many additional tools and programs are available to help keep your child as strong and healthy as possible. CDPHP® offers detailed, up-to-date information on its diabetes site, as well as ongoing support from a member of the CDPHP Care Team. The following online resources and organizations also provide a wealth of information about the disease: