The path from childhood to adulthood is seldom a smooth one. Just dealing with the daily business of childhood — school, friends, family, growing and developing — presents a wealth of ups and downs, triumphs and disappointments, stumbles and falls. But add to this mix a chronic illness and the already complex, often tricky, sometimes daunting path of childhood becomes further complicated, at best.
For the approximately 127,000 children younger than 19 who have diabetes — as well as for their families — chronic illness means dealing with days of good health and bad, carving time out of a normally hectic family schedule for medical treatment and, sometimes, medical emergencies, and coping continually with the emotional consequences of any chronic illness. To a greater or lesser degree, having diabetes will affect the ways a child performs at school, socializes with friends and interacts in the family. And whatever affects the child inevitably affects the family. Almost without exception, juvenile diabetes exacts a high financial and emotional cost for the entire family.
Yet, that doesn’t mean that the news is all bad. Until a few generations ago, type 1 diabetes was virtually untreatable and was almost always fatal. But with the discovery of insulin in 1921, type 1 diabetes has become a manageable condition. Despite the fact that it can pose significant challenges, most children with diabetes can expect to live full and productive lives. But that means learning a few tricks of the trade.
First, understanding the condition is essential for being able to manage it. Diabetes, one of the most common chronic disorders of childhood, affects an estimated 18 of every 100,000 people younger than 20 years of age. The risk of developing diabetes is higher than nearly any other severe chronic childhood disease. Diabetes seldom appears before age 4. For girls, the peak incidence is between the ages of 10 and 12. The peak incidence for boys is between 12 to 14 years of age.
Almost all children who develop diabetes have type 1, insulin-dependent diabetes, which requires daily insulin injections and regular monitoring of blood sugar levels. This type of diabetes is thought to be an autoimmune disorder — a disease process in which the body’s immune system, which normally defends against such infectious agents as bacteria or viruses, attacks a part of the body itself. In type 1 diabetes, the immune system attacks the beta cells in the pancreas, which produce insulin. Insulin is the hormone that aids in the transport of sugar (glucose) into cells where its breakdown serves as the body’s main source of energy. When glucose is not metabolized properly, high levels of glucose accumulate in the blood and generate a number of other chemical abnormalities as well.
The initial symptoms of childhood diabetes may look like the flu. Typically, a child becomes ill, urinates frequently and complains of constant thirst; this happens as the body tries to rid itself of the extra glucose through the urine and then to replace the lost fluids. Perhaps the child will begin wetting his bed long after he has stopped wearing diapers. He may feel consistently hungry, because the body is not processing food into energy, and he may be tired and begin to lose weight as he starts to burn fat for energy. In addition, his vision may become blurred.
Controlling Juvenile Diabetes
Controlling type 1 diabetes involves replacing the insulin that the child can not make. Generally, as long as glucose levels in the blood are maintained, a child will feel better, grow normally and be less likely to develop the related late medical complications, such as eye disease, kidney disease and nerve damage.
Insulin is administered through shots. Consistency and timing of medications, rather than restrictions of certain foods, are the critical parts of treatment. Strict compliance with dosage and timing of the injections is crucial. Measuring glucose levels and following a regular meal plan are also important aspects of keeping a child’s blood glucose at a healthful level.
Injections of precise amounts of insulin must be given three or four times per day. You may need to recruit the school nurse or babysitter to help. Usually parents give the shots until the child is able to administer them. Parents generally need to be involved in monitoring blood sugar levels as well. When blood sugar remains difficult to control or multiple injections are not feasible, an insulin pump may be an alternative.
The goal of any dietary plan is to maintain levels of glucose in the blood. Therefore, foods rich in simple sugars — candy, cookies, sugary snacks and non-diet sodas — must be limited. A healthful, varied diet rich in whole grains, fruits and vegetables is the best way of ensuring overall health for your child.
In general, healthful eating for people who have diabetes is the same as for those who don’t. For children with type 1 diabetes, the diet must contain sufficient nutrients and calories for healthful growth.
As a rule, a child’s diet should follow the U.S. Department of Agriculture’s Food Guide Pyramid. This nutritional guideline creates six food groups and recommends the number of daily servings for each: six to 11 servings of bread, cereals, rice and pasta; three to five daily servings of vegetables; two to four servings of fruits; two to three servings of dairy products; two to three servings of meat, poultry, fish, dry beans, eggs and nuts; and very moderate use of fats, oils and sweets.
For the most part, a child with diabetes can eat just about any food as long as he does so in moderation and balance. At the same time, some thought has to be given to the amount of complex carbohydrates — breads, cereals, rice, pastas — in the diet because they have the same effect on blood glucose as does a simple carbohydrate, such as sugar.
When it comes to controlling diabetes, when a child eats is as important as what he eats. Eating usually has to be synchronized with insulin use. In general, a diabetic child should eat three meals at regular times, often supplemented by three regularly scheduled snacks — midmorning, midafternoon and bedtime. Working with your child’s doctor and perhaps a dietitian can help you measure the amounts of carbohydrates (foods that the body converts into sugars) your child needs at meals and snacks. In the end, if you are thoughtful about your child’s diet, by the time she becomes a teenager, eating right will have become second nature to her.
Exercise And Activity
At one time, it was thought that children with diabetes should not be physically active. Today, doctors realize that physical activity and exercise are important factors in controlling blood sugar. Also, exercise tones muscles and bones and keeps the cardiovascular and neurological systems healthier and better able to withstand the potentially damaging effects of diabetes.
Controlling diabetes means making time for the condition in your child’s daily schedule. Chances are that your child will have to interrupt her activities regularly to have a snack. She may have to come home after school to check her blood glucose before she meets her friends or takes part in after-school activities. Children with diabetes learn to do special things, such as pricking their fingers to test for blood glucose levels. Eventually, most learn how to inject themselves with insulin. At camp, during sleepovers, or in a college dorm, youngsters with diabetes have to wake up earlier to take their insulin and eat a full breakfast on schedule.
Numerous camping programs are specially designed for children with diabetes. These programs usually combine diabetes education, support and treatment with camping, sports and recreation. The goal of most camp programs is to help children gain self-understanding and self-confidence, as well as a fuller understanding of the challenges of diabetes. Many are run by adults who have diabetes themselves. In addition, because all the other children have diabetes, a child has the opportunity to establish a support network that can last a lifetime. Many such programs are tailored for young adults, offering group discussions, role-playing and dances as well as age-appropriate camp activities. In addition, most involve the families at some point, and some offer weekend retreats throughout the school year.
Emotional And Psychological Support
Because living with any chronic illness presents special emotional and social challenges for children and families alike, finding support and guidance from others — support groups with other families who are also coping with diabetes, and at times a mental health professional — can make a world of difference.
Finally, the Juvenile Diabetes Foundation (JDF), a not-for-profit, voluntary health agency, provides support as well as funds for research. Individual chapters offer support groups and other activities for families affected by diabetes.
For more information, contact:
Juvenile Diabetes Foundation International 120 Wall Street New York, NY 10005-4001 1-800-JDF-CURE 1-800-223-1138