Barbara Schreiner, PhD, APRN, CPLP, CDE, BC-ADM,1 and Stephen W. Ponder, MD, FAAP, CDE2
1Schreiner has more than 30 years’ experience working with children and families with diabetes and is the director of research for Elsevier, Inc. 2Ponder is a practicing pediatric endocrinologist and Pediatric Residency Director at Baylor Scott & White Healthcare.
Having diabetes during childhood and adolescence poses distinct challenges and requires unique solutions. Although the child with diabetes will typically have type 1 diabetes (T1D), increasing numbers of children and teens are developing type 2 diabetes (T2D).
Children with T1D typically present with the classic symptoms of diabetes: polyuria, polydipsia, ketonuria, and weight loss. In the very young child, early symptoms of diabetes, such as lethargy, irritability, and dehydration, are often mistaken for flu or gastroenteritis. The child with T2D classically will have a BMI in the ≥85th percentile and have a strong family history of diabetes, display features of insulin resistance, or belong to a high-risk population (e.g., Latino, African American, Native American, or Pacific Islander).1 Overweight children should be screened for prediabetes and T2D using oral glucose tolerance test (OGTT), fasting plasma test (FPT), or A1C every 3 years if they meet these criteria.2
Methods to verify the diagnosis of T1D include measurement of serum markers of autoimmunity.3 Five assays are commercially available. Pediatric endocrinologists or diabetes specialists may measure all or some of these around the time of diagnosis to verify evidence of pancreatic autoimmunity indicative of T1D. Results usually are reported days to weeks later so these are not always useful to verify diabetes type at the time of clinical presentation. Insurance coverage is variable. It has been shown that ~15% of overweight or obese children diagnosed with insulin resistance and T2D also possess serum markers of pancreatic autoimmunity. In these cases, the diagnosis of T1D with insulin resistance is more appropriate.
In addition to T1D and T2D, children experience other metabolic disturbances of glucose metabolism, including cystic fibrosis–related diabetes (see Chapter 33), maturity-onset diabetes of the young (MODY), and neonatal diabetes. Cystic fibrosis–related diabetes is neither an autoimmune disease nor a disease of insulin resistance. Rather, it results from β-cell dysfunction caused by pancreatic fibrosis and fatty infiltration. MODY is also a distinct type of genetic and metabolic disorder. Occurring mostly in children, it is a type of familial diabetes characterized by autosomal-dominant inheritance. MODY results in an insulin-secretion defect that leads to hyperglycemia. The child typically has neither insulin resistance nor insulin antibodies. Children with MODY have mild hyperglycemia with no ketones and generally are lean. The term MODY often has been used incorrectly to label T2D in children. Diabetes occurring under 6 months of age is termed neonatal or congenital diabetes. Neonatal diabetes is a genetic abnormality. Neonatal diabetes can be transient or permanent. Genetic testing is recommended for all children diagnosed less than 6 months of age. Depending on the diagnosis, insulin may not be the treatment of choice. A comparison of T1D and T2D is presented in Table 28.1.
Table 28.1—Comparison of Type 1 and Type 2 Diabetes in Children
|
Type 1 diabetes |
Type 2 diabetes |
|
|
Mean age at onset (years) |
10 |
13.5 |
|
Ethnicities at elevated risk |
Caucasian |
African American Latino Native American Pacific Islander |
|
Diagnostic threshold: fasting plasma glucose |
≥126 mg/dL (≥7.0 mmol/L) |
≥126 mg/dL (≥7.0 mmol/L) |
|
Diagnostic threshold, in the presence of classic symptoms of hyperglycemia or hyperglycemic crisis: random plasma glucose |
≥200 mg/dL (≥11.1 mmol/L) |
≥200 mg/dL (≥11.1 mmol/L) |
|
A1C diagnostic threshold: A1C |
≥6.5% |
≥6.5% |
|
Typical body shape |
Lean, although may occur in the context of overweight or obesity |
Obese, often central |
|
Acanthosis nigricans |
None |
Possible |
|
Genetics |
Possible |
Probable |
|
Primary treatment |
Insulin |
Meal planning and exercise |
|
Additional treatment |
Meal planning and exercise |
Metformin and insulin |
|
Underlying pathophysiology |
Autoimmune destruction of β-cells |
Progressive loss of β-cell insulin excretion frequently on the background of insulin resistance |
|
Progression of disease |
From honeymoon period (remission) in the first year, for some, to β-cell destruction |
From β-cell hypertrophy to β-cell exhaustion |
|
Comorbidity |
Other autoimmune diseases (e.g., celiac disease, thyroid disease) |
|
|
Source: Adapted from American Diabetes Association4 and Chiang et al.5 |
||
INITIATING TREATMENT
In managing diabetes in children, a health-care professional must consider a number of issues unique to the pediatric population.
Goals of Care
Diabetes management for the child and family must include goals for achieving normal physical growth and psychosocial development, as well as family and peer relationships and school interactions. These goals are in addition to the typical objectives for gaining glycemic control, delaying and preventing chronic complications, and minimizing acute complications.
The Honeymoon Period and T1D
As many as 62% of children with T1D experience a partial remission of their disease.6 Known as the “honeymoon period,” this is a time of decreased demand for injected insulin because the child’s pancreas produces some endogenous insulin. As a result exogenous insulin doses decrease, and the patient’s diabetes may be a bit easier to manage.6 The honeymoon period may last 6 weeks to 2 years.6 Some children never seem to have a remission. Once the honeymoon period is finished, the β-cells stop producing clinically significant amounts of insulin, and the child’s need for injected insulin increases. Health-care providers must educate families to prepare them for the beginning and end of the honeymoon. Without this preparation, they may believe their child’s diabetes has been cured.
Linear Growth
Monitoring height and weight and pubertal development is a necessary component to pediatric care. Although now rare, Mauriac syndrome, a diabetes-related growth disorder, may affect children who have long-term suboptimal control.7 Features of this condition include delayed linear growth and sexual maturity, joint contractures, and hepatomegaly.
Children should be weighed and measured quarterly. Their growth should be plotted not only on age-appropriate standardized height and weight charts, but also on BMI charts, which are available from the Centers for Disease Control and Prevention (CDC).8 BMI is used differently when assessing children versus adults. Body fat differs in girls and boys as they mature. BMI charts thus are based on sex and age. Percentile cutoffs are used to identify overweight children (Table 28.2).
Table 28.2—Classification of Children Based on BMI
|
Classification |
BMI for age |
|
Underweight |
<5th percentile |
|
Healthy weight |
5th percentile to <85th percentile |
|
At risk of overweight |
85th to <95th percentile |
|
Overweight |
≥95th percentile |
Source: Reprinted with permission from Centers for Disease Control and Prevention.9
The growing child who has diabetes requires an ongoing source of nutrients. Parents of the child with T1D sometimes will try to limit carbohydrate intake to control blood glucose, not realizing that appropriate calories are necessary for linear growth. They may also limit insulin as a way to manage glucose levels. The more reasonable approach is to adjust (increase) insulin doses as the child grows. The growing child may require an insulin dose adjustment every 3–4 days during growth spurts.
Growth of Specific Organs
In addition to linear growth, the young child experiences rapid development of organs, such as the central nervous system (CNS) and the gastrointestinal system. The CNS requires a constant supply of glucose, with the brain requiring about 6 g/h glucose. Because glycogen stores are limited in the young child, this glucose requirement must be met by consumed calories. Having limited glycogen stores also means that young children using insulin are at increased risk of hypoglycemia. Such physiological changes have implications for the child’s meal plan. Meals and snacks must be spaced throughout the day, especially for the infant, toddler, and preschooler.
Cognitive Development
The growing child is also in the process of developing cognitive skills. This process will affect the child’s health beliefs and problem-solving skills. For the very young child, illness often is viewed as punishment and or a temporary state. A young child hospitalized at disease onset might believe that his or her diabetes will go away once he or she returns home. Preschoolers might believe that they will lose all of their blood through a fingerstick. The infant responds to the parent’s anxiety and sadness during injection time. Abstract concepts, such as causes of hyperglycemia, are not understood until later childhood, and the math skills required for dose adjustments and carbohydrate counting are not honed until young adolescence. Parents may overestimate a child’s ability to independently manage diabetes, particularly if the child is adept in other areas of physical, social, or cognitive skills.10
Psychosocial Development
Another difference for the child with diabetes involves developing psychological and social skills. As the child matures, his or her psychosocial focus changes. The infant, for example, depends on his or her parents, whereas the school-age child begins to form relationships with peers and other adults, such as teachers and school nurses. Adolescents focus on individuation while maintaining a peer-group relationship. Diabetes will affect each developmental stage.11Table 28.3 summarizes the issues pertinent to each age and stage of development.
Table 28.3—Impact of Diabetes at Different Ages
MEDICAL NUTRITION THERAPY
Medical nutrition therapy for the infant with T1D focuses on providing adequate calories for rapid growth. The infant will need to feed every 3–4 h. Parents eventually learn how to coordinate meals with insulin and naps. Infants can receive formula or continue breast-feeding.
The toddler with T1D poses particular meal-planning challenges. Typical behaviors include food jags (eating only one or a few foods rather than a variety) and negativity. A young child may prefer to eat only one food for the whole week and refuse to eat anything else.
The preschooler’s appetite often will increase immediately before a growth spurt. Toddlers and preschoolers will need morning, afternoon, and bedtime snacks to build and maintain an available source of glycogen. They are easily distracted, however, by other activities and often do not complete a meal or snack. Parents may find it nearly impossible to predict what the child will eat, making it difficult to plan a safe insulin dose. Fortunately, the rapid-acting insulin analogs make it possible to give the insulin dose after a meal. Parents then can more safely determine the dose based on what is truly consumed.
For the school-age child, medical nutrition therapy challenges include school lunches, snacks, parties, and eating out. Parents begin to have less control over their child’s food choices and less knowledge about what the child is eating. School-age children must begin to develop their own meal-planning skills, including carbohydrate counting, food choices, and portion control. Planning and schedules become increasingly important as these children participate in more activities away from home. As the school-age child begins to participate in activities outside of the home, parents will need to plan more carefully and consider the following:
• Whether the child eats a school lunch or packs a lunch from home
• Changes in the child’s overall schedule with each new school year
• Types of food that are provided to the child at school
• Planned exercise, such as physical education or after-school activities
• Possible overnights, sleepovers, or school trips
Planning the school-age child’s day means considering the schedule for lunchtime, physical education and exercise time, after-school snacks, and after-school athletics. Timing of meals and snacks may vary considerably from weekday to weekend.
The adolescent with diabetes also finds meal planning demanding. Teens desperately want to be part of the crowd, and their nutrition habits may include frequent fast food meals, attempts at a vegetarian diet, or disordered eating behaviors. Regular soft drinks and sports drinks are favorites in this age-group and must be limited to maintain glycemic control. Teens typically do not get enough calcium or other important nutrients in their diet. At this age, boys are interested in building muscle and bulk, whereas girls are concerned about weight gain. The focus, therefore, for the teen with diabetes is controlling portion sizes; consuming fewer calorie-dense foods; and increasing fruits, vegetables, and calcium in the meal plan.12 Eating disorders are more common in adolescents with diabetes than in other teens.13 Warning signs of such problems include binge eating, skipped insulin doses, family stress, frequent hypoglycemia or diabetic ketoacidosis (DKA), and concerns about being weighed.
Medical nutrition therapy for the overweight or obese child with T2D focuses on calorie reduction in the context of a healthy diet. Simple ways to decrease calories are to eliminate sugar-filled drinks, such as soda and sports drinks, and limit fruit juice portions. The entire family should limit weekly or daily visits to fast food restaurants and avoid super-sizing servings. The U.S. Department of Agriculture’s (USDA) consumer program, MyPlate (www.MyPlate.gov), is a helpful teaching tool. Some children with T2D also are treated with insulin and would have the same medical nutrition considerations as those with T1D.
EXERCISE
As the young child with diabetes becomes more active and mobile, insulin and nutrition plans must be adjusted. For the toddler, play and erratic activity patterns are the norm. While encouraging the child’s physical activity, it is important also to monitor blood glucose carefully to avoid hypoglycemia. School-age children have more predictable activity patterns, including school physical education and sports. For children with diabetes, a snack will be necessary before exercise if their blood glucose level is <100 mg/dL (<5.6 mmol/L). For the athletic child using insulin, adjusting meals, snacks, and insulin doses is required to accommodate practice days versus game days.
Despite the importance of sports and after-school exercise, more children are leading inactive, sedentary lives. Computer games and television have replaced softball games and bike riding. The prevalence of childhood obesity is highest in children who watch >2 h of television per day,14 and obesity risk increases 6% for each additional hour of television viewing per day.15 In contrast, video games that promote movement during use (“active video gaming”) have been shown to be helpful in controlled settings aimed at pediatric weight management.16 But the general trend of handheld devices argues in favor of limiting physical activity more than promoting it in children. Diabetes self-management education includes recommendations to limit such sedentary activities. The family should model and encourage physical activity; counseling for the obese child must include the entire family.
MEDICATIONS
Distinct issues concerning insulin injections pertain to the infant with diabetes. The infant has less surface area and thus fewer potential injection sites. Site rotation is important, with the arms, legs, and buttocks as preferred sites. Commonly available syringes and insulin pens have half-unit markings, allowing for much more precise dosing for the young child. Parents need to receive instruction in the use of half-unit syringes because the unit and half-unit markings are opposite each other on the syringe barrel on some models. NovoNordisk has an insulin pen that also delivers in half units. Needle length of 4–5 mm is appropriate for all ages. Some infants require small amounts of insulin, necessitating dilution of the insulin. Most insulin manufacturers have a diluting fluid specific to the brand and type of insulin; a pharmacist is a great resource for help with diluting insulin to U10 or U25.
The young child’s insulin requirement will vary considerably as he or she grows. At onset, most children with T1D require between 0.5 and 0.8 units/kg body wt/day. During the honeymoon phase, insulin requirements may drop to near zero. As the child enters puberty, insulin needs may soar to 1.0–1.5 units/kg body wt/day. Parents need to be aware that their child may require two or three dose changes per week during growth spurts. Most children will need ~50–60% of their daily dose as basal insulin if using injections. Because of the need for flexibility in dosing, commercially premixed insulins typically are not recommended for the child with T1D. Premixed insulins, however, may be the best option in situations in which family or social support is reduced, such as seen in parental conflict, low health literacy, or severe economic barriers that cannot be overcome. These situations often involve older children and teens who may be compelled to take on more self-care duties than they should, but the situation in the home demands it. In these cases, use of a premixed insulin regimen can simplify an otherwise complex self-care task for a child and family. Also, in cases in which basal-bolus insulin therapy has failed because of nonadherence and inability for close family supervision, premixed insulin regimens can be quite helpful in requiring fewer doses each day and a fixed dosing structure. Eating meals at consistent times and in consistent amounts is a necessity for safety to prevent hypoglycemia or hyperglycemia.
Diluting Insulin
To dilute U100 insulin to U10 insulin, 0.9 cc of diluting fluid would be added to 0.1 cc of U100 insulin in a sterile mixing bottle. To administer 1 unit of insulin, 10 units (0.1 cc) is drawn into the syringe (i.e., 10 units/cc insulin).
Young children may be exquisitely sensitive to fast-acting insulins. Some insulin programs use only intermediate-acting insulin given several times during the day, thus providing basal requirements only. Insulins glargine or levemir also may be used as the basal insulin. Newer long-acting formulations are available including degludec and U300 glargine, with degludec recently receiving approval for use in children. Many centers also use insulin pumps, especially in very young children.
For young children, rapid-acting insulin is often given after meals. This allows the parent to determine a correct dose based on what the child actually ate.17 Continuous glucose sensor data, however, are showing that the food begins to affect the blood glucose immediately. With an insulin pump, part of the bolus may be given premeal by up to 15 min and the remainder given after the meal, once the totals carbohydrates or calories are consumed.
Knowing when to transfer self-care is another issue for parents and is unique to pediatric diabetes. Most children can begin to help with injections at an early age (as young as 4 years old).18 They can select the injection site, wipe the skin with alcohol or a clean wipe, and push in the plunger after the parent has injected the needle. Many 8- to 10-year-old children have the skills to completely give an injection. How quickly a child gains these skills is highly individual. Parents can facilitate self-care by encouraging the child to participate in some small way. By the age of 10–12 years, children with diabetes are able to draw the insulin or independently use an insulin pen, determine correct doses, and inject without assistance.19 Parental supervision still is required throughout childhood depending on the child’s needs, both physical and emotional. Parents often will need guidance in determining when it is safe for the child to begin the transition to self-care. Chronological age should not be the sole factor. This can be a time of great anxiety for parents as they make the move from primary caregiver of the young child to coach and support for the adolescent. Nursing support and guidance is essential in these transitional phases in diabetes care.
Multiple daily injections (MDI) and insulin pumps have become increasingly common forms of insulin delivery (see Chapter 6, Treatment Strategies for Type 1 Diabetes, and Chapter 26, Diabetes Technology). Both systems require greater involvement, skill, and knowledge from the child and family. For example, math skills are important in helping to calculate meal insulin doses and correction doses. Despite possessing these skills, children may commonly forget meal boluses or guess rather than calculate a dose. Newer pumps have reminder alarms and are able to communicate directly with blood glucose meters to calculate recommended doses for the child based on a preprogrammed algorithm. Continuous glucose monitors integrated with the insulin pump are becoming more common (see Chapter 26, Diabetes Technologies).
Insulin pumps also have been implemented successfully in toddlers and preschoolers. In these children, pump therapy provides a more consistent delivery of basal insulin that can be infused at an hourly rate of as little as 0.025 units/h. The ability to fine-tune insulin doses in this manner has been associated with less hypoglycemia. Parents who are conscientious and have a strong, supportive health-care team knowledgeable in pump therapy are those whose children are most successful.20
Children with T2D have limited medication choices: insulin and metformin. Currently, only metformin is approved for children ≥10 years of age.21 Most pediatric diabetes centers are using this drug as initial therapy and adding insulin as required later.
MONITORING
Blood glucose monitoring for the young child requires some adaptation. Very fine-gauge lancets and adjustable tips on the lancing devices are important tools. The young child’s body has less surface area for fingersticks. Parents should use shallow-depth settings on the lancet devices (usually number 1), use the sides of the finger, rotate fingerstick sites, inspect the sites for soreness and bruising, and consider alternate site testing. Alternate site monitoring is a good option for children but has some limitations. Blood glucose from a site other than the fingertip can vary as much as 10–15% if proper technique is not used. Testing from the forearm or other site should not be used if blood glucose is rapidly changing, if the child is suspected to be hypoglycemic, or during illness.22
Additional glucose checks are needed overnight when the child has been unusually active the preceding day, has not eaten a bedtime snack if using intermediate acting insulin, has required a correction dose at bedtime, has been ill, or has had hypoglycemia at bedtime. Overnight glucose monitoring is helpful when evening insulin doses are being adjusted. New-onset bedwetting may be a sign of hyperglycemia. Parents also may check a young child’s blood glucose to determine the cause of behaviors such as sleepiness, crankiness, or crying. Parents want to discipline unacceptable behaviors but need to distinguish these behaviors from hypoglycemia, as young children may not be able to recognize or articulate symptoms of hypoglycemia. Postprandial blood glucose levels may need to be monitored to determine the adequacy of the mealtime insulin dose.
Recommendations for Self-Monitoring Blood Glucose in Children
Blood glucose monitoring generally is recommended before each meal and at bedtime for the child with T1D. This means that the child will be checking blood glucose at school or at daycare. Parents, school, or daycare personnel, and the diabetes team will need to develop a plan that addresses 1) location of testing, 2) frequency of testing, 3) management of glucose level, and 4) safe disposal of sharps.23,24 Proper hand cleansing is critical as any food residue may alter the glucose results.
Before 2015, American Diabetes Association (the Association) goals for blood glucose levels in children were stratified by age.4 As of 2015, the A1C goal of <7.5% was recommended for all pediatric age-groups.4 Premeal blood glucose target ranges are recommended to be 90–130 mg/dL with bedtime and overnight targets of 90–150 mg/dL (see Table 28.4).
Table 28.4—Plasma Blood Glucose and A1C Goals for Type 1 Diabetes across All Pediatric Age-Groups
|
Plasma blood glucose goal range |
|||
|
Before meals |
Bedtime/overnight |
A1C |
Rationale |
|
90–130 mg/dL (5.0–7.2 mmol/L) |
90–150 mg/dL (5.0–8.3 mmol/L) |
<7.5% |
A lower goal (<7%) is reasonable if it can be achieved without excessive hypoglycemia |
|
Key concepts in setting glycemic goals: • Goals should be individualized, and lower goals may be reasonable based on benefit-risk assessment. • Blood glucose goals should be modified in children with frequent hypoglycemia or hypoglycemia unawareness. • Postprandial blood glucose values should be measured when a discrepancy exists between preprandial blood glucose values and A1C levels and to assess glycemia in those on basal-bolus regimens. |
|||
|
Source: From American Diabetes Association.25 |
|||
In general, glycemic goals should be individualized based on the child or adolescent’s unique life circumstances. If the child has relative hypoglycemia unawareness or a history of frequent hypoglycemia, glycemic targets should be modified upward until their hypoglycemia awareness can be restored. Because lower A1C values are influenced to a greater degree by postmeal glycemic responses, more attention should be given to monitoring postprandial blood glucose levels when discordance exists between preprandial blood glucose levels and A1C values in children on basal-bolus insulin regimens. This greater attention will allow the opportunity to better coordinate meal intake, insulin dosing, and timing to achieve tighter control with less daily glycemic variance.
Lower A1C goals are encouraged as long as they can be attained reasonably. The use of multidose insulin therapy, insulin pumps, frequent blood glucose monitoring, and continuous glucose sensors, along with proper training and ongoing family support can allow for sustainable A1C targets 7% in selected patients. Studies regarding the cognitive effects of severe hypoglycemia in children have been inconclusive. Concerns over adverse neurocognitive effects of chronic hyperglycemia do have greater validity and are a primary reason for lowering of A1C targets across all pediatric age-groups, with prudent modifications based on the child or teen’s unique clinical profile.
For instance, most diabetes teams will loosen blood glucose control in the infant or young child. This avoids undetected hypoglycemia in the child and protects the developing CNS. Conversely, an adolescent using an insulin pump often will have fairly tight blood glucose targets.
Distinct psychosocial issues are related to glucose monitoring in children. The preschooler, for example, relies on magical thinking to explain his or her world and may, for example, believe that all of his or her blood will be lost with a fingerstick. Children this age often will insist on a bandage for every fingerstick and insulin injection. School-age children may find that peers confuse blood glucose monitoring with HIV or AIDS. Teens may avoid monitoring altogether or falsify their record books. Table 28.5 lists suggestions for assessing the child whose blood glucose logs do not match his or her A1C values.
Table 28.5—Troubleshooting When the Blood Glucose Log and A1C Value Do Not Correlate
|
Meter factors |
• Meter coded improperly • Strips outdated • Strips improperly stored • Battery low • Control solution outdated |
|
User factors |
• Errors recording in log book • Not testing when blood glucose may be high • Inadvertent or intentional technique errors in meter use • Avoiding negative responses from parents and health-care professionals for having high blood glucose readings • Fabricating log book entries |
|
Physiological factor |
• High postprandial or nocturnal blood glucose levels occur when testing is not done |
Some parents are so anxious about their child’s blood glucose that they check levels seven or eight times a day. This behavior especially occurs after a child has had severe hypoglycemia.26 These parents need time to build self-confidence and to feel less scared. Strategies for helping these families include ongoing reassurance, frequent contact with the diabetes team, and adjustment of glucose targets to avoid further severe hypoglycemia. Depending on insurance coverage, a diagnostic or personal continuous glucose monitor may provide additional information and offer the parents the means to visualize the child’s blood glucose range, allaying some of the fears concerning hypoglycemia. Currently, two devices allow sharing of glucose data via continuous glucose sensors with smartphones. The parent or school nurse can have real-time glucose levels of the child on their smartphone. Many of the glucose meters now are Wi-Fi enabled, allowing data to be shared. Referral to a mental health professional is recommended if self care behavior difficulties are present.
MANAGING ROUTINE PROBLEMS
Hypoglycemia
The mechanisms for hypoglycemia in children with diabetes are similar to those in adults. In the very young child, however, limited glycogen stores or unrecognized hypoglycemia can lead to more severe or frequent episodes. For the toddler, excitement may lead to hypoglycemia. Illness also may be a cause of hypoglycemia in the child who is not eating well when sick. The longer a child has diabetes, the greater the risk for severe hypoglycemia, possibly because of defects in glucagon secretion.27
Parents and children fear hypoglycemia, particularly overnight. They worry that the hypoglycemia will be undetected and result in seizures or death. The incidence of mild-to-moderate nocturnal hypoglycemia in children has been reported to be 14–35%,28 whereas 6.6–22% of pediatric patients will experience a hypoglycemic seizure.29 The mortality associated with hypoglycemia in children with diabetes is not well documented but may be as low as one-tenth of the mortality associated with DKA.30 Predictors of nighttime hypoglycemia include younger age and lower A1C levels. More recent studies using continuous glucose monitoring in children have found that nocturnal hypoglycemia is a common occurrence, can be prolonged, tends to happen in the early part of the night, and is associated with bedtime glucose values of <150 mg/dL (<8.3 mmol/L).31
The impact of hypoglycemia on the child’s later cognitive functioning is controversial. The Diabetes Control and Complications Trial (DCCT) study group29 in general found no association between severe hypoglycemia and decrease in memory skills. Yet Blasetti et al.32 found impairment in memory and learning, but not in motor speed following severe hypoglycemia.
For the adolescent who is driving, assessing and treating hypoglycemia is particularly important for the safety of the child, passengers, and other drivers. Adults with T1D have reported driving even when their blood glucose level was <70 mg/dL.33 Adolescents may make similar errors in judgment. For adolescents diagnosed with T1D, additional steps may need to be taken to obtain a driver’s license.33 At present, at least 23 states require drivers to disclose a diagnosis of T1D. Thus, patient education should include a discussion about responsible self-care when driving: checking blood glucose before driving, having testing supplies in the vehicle, wearing a medical identification tag, and having snacks available. Recommended guidelines for parents and teens should be reviewed (Table 28.6) and nurses should help parents and teens to prepare for driving with diabetes. Chapter 8, Self-Management Practices: Problem Solving, includes additional information regarding driving precautions.
Table 28.6—Driving Safely with Diabetes
Driving Safely with Diabetes
Here are some rules of the road to pass on to your teen:
• Pass the test. Check your blood glucose (blood sugar) level before getting into the car. Every time. No exceptions.
• Stop for a diabetes red light. Treat low blood glucose and then recheck in 15 min. Do not get behind the wheel until blood glucose is in the target range.
• Slow down. Treat your blood glucose even if it means being late. It’s never okay to drive with a low blood glucose level. Call whoever is waiting for you and explain why you’ll be a little late. They’ll understand.
• Always have enough fuel. Stock the car with healthy, nonperishable snacks and fast-acting sugars. And keep your diabetes supplies within easy reach. Remember, insulin and test strips are damaged by hot and cold temperatures. Never leave your diabetes supplies in the car.
• Pull over. Pull over immediately if you are feeling sick or low while driving. Check your blood glucose, treat yourself, wait 15 min and then recheck.
• ID, please. Don’t leave home without a driver’s license and medical ID bracelet or necklace. Always wear a medical ID.
Check Before You GO
• Get into the routine of reminding your teen to check his blood glucose level before going places.
• Riding in a car with a low blood glucose level is dangerous—and driving is even worse, it’s similar to driving drunk. So be sure your teen always checks her blood glucose level before getting in the car.
Source: From American Diabetes Association.34
For the ill child who refuses to eat or drink and is having hypoglycemia, small doses of glucagon may be given.35 This minidose glucagon treatment is outlined in Table 28.7. Glucagon is mixed according to the package insert. The parent then uses a standard insulin syringe to withdraw an amount of glucagon appropriate for the child’s age. The dose may be repeated if blood glucose does not improve every 30 min.
Table 28.7—Using Minidose Glucagon
Source: From Haymond and Schreiner.35
Parents and caregivers also must know how to administer glucagon for severe hypoglycemia. The dose of glucagon for adults and children >20 kg is 1.0 mg. For children <20 kg, the glucagon dose is 0.5 mg or the equivalent of 20–30 µg/kg.36
Hyperglycemia and Sick Days
Management for the child with T1D during illness involves fluid replacement and glucose control. When ill, infants and young children are at increased risk of dehydration, so fluid replacement is crucial to preventing DKA. Illness, colds, and infections are the main causes of hyperglycemia. But in the infant, hyperglycemia may follow routine immunizations or even teething. For the adolescent, hyperglycemia and ketosis may result from missed insulin doses,37emotional stress, or the impact of insulin resistance because of pubertal hormones.
Practical Point
Hypoglycemia in the child is treated with 15 g carbohydrate, with the treatment repeated every 15 min as needed; this is known as the rule of 15. Association guidelines recommend 15–20 g, but the size of the child and the level of low blood glucose may dictate the amount of glucose needed to treat a low blood glucose. This treatment often needs to be followed with a carbohydrate or protein snack if the next meal or snack is >1 h away. The insulin regimen, however, primarily determines the need for a snack (e.g., a child using long-acting insulin or an insulin pump likely will not need follow-up calories).
Although urine glucose testing is no longer used, urine ketone testing is still the most common method for assessing ketones on sick days. Home blood ketone monitoring is also available and recommended by some pediatric endocrinologists. When blood glucose is ≥240 mg/dL or at any blood glucose level during illness urine or blood ketones should be checked. Oral fluids are important at this point. The child should be encouraged to drink 0.5–1.0 cup of sugar-free liquid every hour if other nourishment can be taken. If ketones are moderate or large, the child also will need additional fast-acting insulin. The child will need as much as 10% of the total daily dose or 0.1 units/kg of additional fast-acting insulin. This dose is repeated every 2–4 h until the blood glucose level is <300 mg/dL (16.7 mmol/L) or ketones fall below moderate levels. If the child is not eating or if moderate to large ketones are present, sugar-containing liquids may be needed with the frequent fast-acting insulin injections.
Parents need to know when to call for help during a sick-day episode. DKA is a medical emergency that may be avoided with early and aggressive management.37 Signs that the child will need medical attention include prolonged vomiting or diarrhea, refusing to drink, lethargy, rapid and deep (Kussmaul) breathing, signs of moderate to severe dehydration, or persistent hyperglycemia and ketosis.
Repeated episodes of DKA, often seen during adolescence, merit further assessment. These children may be depressed, and often live in chaotic or stress-filled families. In other cases, the DKA may be the result of insulin withholding or reduction because of an eating disorder (see Chapter 24, Depression, Anxiety, and Eating Disorders). Family counseling and close follow-up by the diabetes team are important interventions for these children.38
Practical Point
An easy way to collect enough urine from an infant or toddler is to place several cotton balls in the child’s diaper. This will prevent the sample from being wicked into the diaper. Serum ketones provide a measurement of the more abundant β-hydroxybutyrate and may be useful in managing ketosis in the child. Two meters are commercially available to measure fingerstick ketones.
CHRONIC COMPLICATIONS
For those with T1D, screening for complications begins 5 years after diagnosis. The time frame for the development of chronic complications in young children with diabetes, however, may not follow the usual time frame applied to adults. One longitudinal study found that children diagnosed with T1D before puberty, especially those diagnosed at <5 years old, have a longer time free from complications, such as retinopathy and albuminuria.39Elevated A1C values during adolescence seem to accelerate the onset of complications.
For children with T2D, however, cardiovascular risk factors and comorbidities may be present at diagnosis.40 The child with T2D therefore should be assessed for hypertension and dyslipidemia early in the treatment process. In addition, teenagers with polycystic ovary syndrome (PCOS) may have an insulin resistance component to their underlying pathophysiology. PCOS often is accompanied with being overweight or obese and is a risk factor for T2D (and vice versa). Making a diagnosis of PCOS in adolescents can be a challenge. It requires a complete assessment of the teen, including clinical signs and symptoms of male hormone excess, increased androgen levels, and exclusion of other causes of androgen excess in the presence of oligomenorrhea. Use of ultrasound to look for polycystic ovaries is not recommended because of overlap with normal adolescent reproductive physiology.41
Diabetes education for both children with T1D and those with T2D must include information about complications, especially detection and prevention. The nurse should provide information in a nonthreatening way and avoid scare tactics. A good approach is to focus on the positive impact of maintaining near-target blood glucose and A1C values. Although near-normal blood glucose levels may avoid future complications, emphasis should be placed on the fact that these glucose levels also will give the child energy to play and participate in sports. Having near-normal A1C levels will allow the child to reach maximal height potential. Maintaining euglycemia may allow parents to feel more confident and thus allow the child greater independence.
SPECIAL ISSUES FOR THE CHILD WITH DIABETES
Parents and Other Family Members and Caregivers
Parents of a newly diagnosed child will grapple with confusion and guilt. They will wonder whether they were responsible for their child’s diabetes and how they could have prevented it.42 They will be confused and concerned. A hundred questions will arise: How did this happen? Where did it come from? What did I do or not do? Is it my fault? What about my other children? What is going to happen? They will deal with family members who have the same questions. They will find themselves explaining to and, eventually, educating anyone who comes into contact with their child. They will fear hypoglycemia and other complications. They will fear making mistakes. They will have to learn to trust other caregivers. Their parenting skills will be tested.
The diabetes team can best help parents by providing consistent, accurate information and encouraging hope and optimism. Parents need to have their efforts and successes recognized. They need role models and support from other families. They need accurate information about the risk of diabetes for their other children.43 Families that are most successful in raising a child with diabetes are highly cohesive and organized. The parents share open communication and provide consistent guidance and problem solving. Successful parents are typically warm and nurturing.44
The sibling’s response to diabetes may range from feeling guilty and responsible to being fearful of also developing the disease. Other children in the family may hope they do get diabetes so they will get as much attention as their sibling with diabetes. Older siblings often feel extraordinarily responsible for the care of their brother or sister. They worry about hypoglycemia and monitor the child’s food choices. Unfortunately, siblings are often forgotten in the care plans and teaching sessions. It is important to prepare families for the typical reactions of siblings to the child’s diabetes.
Diabetes is also a concern for others outside of the child’s immediate family. As children grow, they will be in the care of many other adults: teachers, school nurses, daycare workers, babysitters, and so forth. Any care plan or teaching plan must include these other individuals. Babysitters in particular must be educated about basic diabetes care. Instructions should include how and when to prepare meals and snacks, how to detect and treat hypoglycemia, and how to check blood glucose and urine ketones. Other instructions may include who to call and when to call for help.
Threatening versus Nonthreatening Approaches
Threatening
“Do you want to end up on dialysis or have your leg amputated? Because that’s going to happen if you don’t do what the doctor tells you.”
Nonthreatening
“Lowering your overall blood glucose levels will help prevent the complications from diabetes.”
“What is the hardest thing to do when taking care of your diabetes?”
Give them time to answer.
“Maybe together we can find a way to make that a little easier.”
School
Returning to school after diagnosis or starting a new school year can mark new challenges for the family and child with diabetes. Although parents want a knowledgeable and trained adult to be available for their child, school administrators may struggle with competing demands on personnel and resources. In this case, parents will need to be leaders and advocates for the child.23 Federal laws and some state laws protect children with diabetes from discrimination in daycare settings and schools. Parents, however, will have to educate each new school or caregiver about the particular needs of their child.
Parents should meet with the appropriate school personnel and be prepared to identify resources that will help educate them about diabetes in children and to provide child-specific training and information on how to best meet the needs of their child. Many schools do not have a full-time nurse on staff, and many times a school nurse is not available, so a small group of school staff members should be trained to provide routine and emergency care. Although many teachers, coaches, and principals are familiar with diabetes in adults, they often lack an accurate appreciation for the differences in safely managing diabetes in children. The ADA offers educational tools for school personnel at: diabetes.org/safeatschooltraining and diabetes.org/childcare.
At the meeting, parents should collaborate with the school nurse and school administrator to implement a Diabetes Medical Management Plan (DMMP). This plan should address blood glucose targets and checking, insulin and pump management, identifying and treating hypoglycemia and hyperglycemia, supplies to be kept at school, and ability of the student to provide self-care and participate in activities. The DMMP should be prepared and signed by the child’s health-care provider.
In addition to the DMMP, the parents should ask that a 504 Plan or Individual Education Program (IEP) be implemented for their child. The 504 Plan (a plan for services under Section 504 of the Rehabilitation Act of 1973) and the IEP (a plan for services under the Individuals with Disabilities Education Act) complement the DMMP by ensuring that the child’s rights and needs are being appropriately and formally addressed. Samples of both a DMMP and a 504 plan are available on the Association’s website (www.diabetes.org).
At times, parents may meet resistance and need to advocate strongly for the rights of their child to be safe at school. It may be necessary to contact school officials at a higher administrative level. In such cases, parents should be knowledgeable about the law and legal rights and stay calm and confident as they advocate for their child. Parents also may seek other support from elected officials, their health-care team, or the Association.
A valuable resource for the school nurse and other school personnel, titled Helping the Student with Diabetes Succeed: A Guide for School Personnel, was developed by the National Diabetes Education Program (NDEP), in partnership with more than 200 other organizations.24 This guide is available online and provides valuable information for the school nurse in guiding others in understanding diabetes and in providing a safe environment for all children with diabetes.24 In addition to the NDEP school guide, the ADA’s two-part training curriculum Diabetes Care Tasks at School: What Key Personnel Need to Know can be used by the school nurse or another qualified health-care professional to train school personnel; it is available in the Association’s online store.45
Diabetes Camps
One of the best places for peer support for the child with diabetes is a summer camping program or weekend retreat.46 Diabetes camps introduce the child to other children with diabetes in a mutually supportive environment. The focus of the camp will vary from an educational agenda to a purely recreational one. Children often will learn to give their first injections or may try a new injection site at camp. Both the American Camping Association and the Association maintain lists of recommended camps for children with diabetes. See http://www.diabetes.org/in-my-community/diabetes-camp/ for a list of ADA diabetes camps.
Transferring Care to the Child
Parents must maintain a role in their child’s care through adolescence but that role changes from caregiver to coach as the child matures. Gradually, children need to take over their own care. The speed of the transfer and the skills to be transferred will vary with each child. Tips to keep in mind when transferring care to the child are included in Table 28.8.
Table 28.8—Transferring Responsibility of Diabetes Care to the Child
• Consider each child individually.
—Is the child ready and eager to assume self-care?
—What is motivating the child to take on self-care tasks?
—Does the child have the physical dexterity and cognitive ability to take on the self-care task?
• Consider the parents’ assessment of the child’s readiness.
• Assess the parents’ willingness to “let go.”
—How comfortable is the parent in allowing mistakes?
—How much supervision will the parent continue to provide?
• Transfer care in small, manageable steps.
• Expect lapses in self-care, at any age.
—The parent still has an important role in supervision and guidance.
• Assess parents’ ability to gauge when to increase supervision or support.
Generally, school-age children are ready to begin drawing and injecting insulin. Older schoolchildren and adolescents have the math skills necessary to make insulin dose decisions.19,47
Adolescent Issues
Adolescent with diabetes face unique and complicating factors. Puberty creates an insulin-resistant state in the adolescent, making glycemic control more challenging.48 Conversely, chronic, suboptimal glycemic control can delay puberty. The teen’s self-esteem and body image can be affected by the diagnosis of diabetes and its daily demands. The seemingly constant attention to food, nutrition, and blood glucose may contribute to eating disorders in some teens. Omitting insulin doses to control weight is common.49 Also, normal developmental phases, which may include experimentation with drugs, smoking, or alcohol, can be particularly risky for the adolescent with diabetes.
In addition, at a time when the young person is seeking differentiation and independence, parents may feel more overprotective and concerned.50 Ironically, during the time when parents most need to stay informed about the teen’s diabetes management, communication may be the most strained. Parents often are not prepared for their changing role from caretaker to coach and supporter.
Adolescents with diabetes may suffer from depression or diabetes burnout. Sometimes the signs of these problems are mistaken for typical adolescent behavior. Depression, for example, is two to three times more prevalent in youth with diabetes than in their peers without diabetes.51 Depression in the adolescent may display as withdrawal, dramatic changes in sleeping or eating patterns, lack of goals, or suicidal ideation. Further clinical evaluation and management is needed for the teen with depression.
Diabetes burnout in the adolescent, however, may appear as feelings of failure or hopelessness, omission of insulin injections or blood glucose monitoring, or loss of motivation.52 These teens typically have high A1C values and suboptimal self-care behavior. Management for these adolescents may include more flexible, less complex insulin regimens, such as the use of commercially premixed insulin pens twice a day. Other strategies include setting realistic goals for self-care behavior, acknowledging the teen’s feelings, and reinforcing the adolescent’s efforts at self-care. Helping parents provide further guidance and support is also important. Teaching the teen social skills, problem-solving skills, effective communication, and stress-management skills can increase the young person’s self-efficacy and sense of control.53,54 Referral for behavioral health services may be beneficial.
ROLE OF TECHNOLOGY AND APPS FOR CHILDREN AND ADOLESCENTS
How Technology Is Supporting Care for Children with Diabetes
Devices have become integral to the care of many children with diabetes. Blood glucose meters with data management systems, continuous glucose monitoring (CGM) with wireless communication to insulin infusion pumps, and even videoconferencing with health-care providers have gained in popularity and use.55,56 Medical applications (apps) for smartphones are even more prevalent as children and parents now have access to hundreds of tools to track blood glucose, carbohydrate intake, and exercise patterns. Some apps not only provide documenting and tracking capabilities but also make recommendations for action. As a result, the U.S. Food and Drug Administration (FDA) has issued draft regulations to address safety and risk concerns around such diagnostic or prescriptive algorithms.57
The popularity of texting, particularly among adolescents, has offered a new route for providing support, promoting adherence, and delivering health-care education. Texting is also a means of serving up reminders to check blood glucose, take an insulin dose, and practice other care behaviors.58
Current technology also allows data sharing between children and parents or health-care providers. One of the first reported studies demonstrated that a system that collected blood glucose information and routinely relayed the data to parents resulted in significantly better A1C outcomes.59 This data-sharing role of technology is becoming more regulated by the FDA and others as concerns over privacy and data security increase.
An evolving place for technology is in virtual or remote visits with health-care providers.60 Video visits have been offered to provide a reasonable substitute for follow-up face-to-face encounters. Following are several caveats that have been found to enhance the patient and provider experience with telehealth. The patient should have access to the appropriate technology to ensure a secure videoconferencing capability. Some electronic medical record providers allow for secure encrypted communication with patients that meet HIPPA standards embedded in their patient portals. Patients are encouraged to get previsit labs (e.g., hemoglobin A1C) collected in time for results to be available for discussion during the video encounter. Blood glucose data also are best provided in advance of the visit to allow for discussions regarding pattern control discussions, problem-solving, and troubleshooting. A short patient or parent questionnaire can be requested in advance of the visit to help prioritize patient needs. Patients followed by video visits should have a primary care provider available to manage acute non-diabetes-related problems. At a minimum, the patient should be expected to have an annual face-to-face encounter with the diabetes care provider. Frequency of intervening visits is based on patient needs. Patients are poor candidates for video visits if significant physical or emotional pathology would be better served by a face-to-face encounter and inclusion of a physical exam. Many insurers do not reimburse for video visits, but families often are willing to pay a fee for service if the video visit cost offsets the additive costs of time from work or school and distance traveled. In general, children with T1D are relatively healthy and complication free, which make video visits a progressive alternative for this population.
Effectiveness of Technology
Although technology seems to be gaining a foothold in the care of children with diabetes, its effectiveness in improving children’s health is still in question. Studies, mostly conducted with adults, have yielded conflicting results.61 In some, blood glucose control is significantly improved, whereas other studies lack that finding. Cafazzo et al.62 found, for instance, that a mobile app using gaming strategies and incentives for teens could increase the frequency of glucose monitoring, but not improve the A1C. On the other hand, Kirwan et al.63 found improved A1C values in adults with T1D using the blood glucose and reminder functions of a smartphone app. As in most diabetes research, it seems that a combination of interventions best supports clinical results. Evaluating the effectiveness of technology will require longer studies with larger samples and must address children and adolescent populations.64
Still, technology such as apps is appealing and effective for some. Hale et al.65 and Ristau et al.66 advocate matching the tool to the individual’s needs or interests. For instance, when recommending a smartphone app, it is important to consider the platform (Apple, Android, or other), ease of use, features, and appropriateness to developmental level. Stoyanov et al.67 recently published a checklist to help assess the quality of mobile apps. Security, aesthetics, interactivity, and credibility were among the qualities of desired tools.
Diabetes Apps
For a list of apps suggested by the American Diabetes Association, see Neithercott 2013.68
Transition to Adult Care
When adolescents approach adulthood, they will transition from pediatric to adult diabetes care. Many young adults will make this change between 17 and 20 years of age. Such transitions can be fraught with problems. The adolescent or young adult may be living at home with some parental input or may be dealing with the stress of school, choosing a career, and evolving personal relationships. Poor transition to adult care may result in years of unsupervised medical management and limited complication prevention.69,70 In addition to the adolescent’s concerns, parents may be anxious about moving to a more formal, less supportive environment that encourages the teen’s independence. Health-care professionals who treat only adults may fail to appreciate the anxiety that this transition can present. The health-care professional should help the family through this transition by introducing the topic in early adolescence and by aiding in gradually transferring care and independence to the emerging young adult.69 The National Diabetes Education Program has a useful pediatric-to-adult transition of care checklist on their website, https://www.niddk.nih.gov/health-information/health-communication-programs/ndep/living-with-diabetes/youth-teens/transition-adult-health-care/planning-checklist/Pages/planningchecklist.aspx.71
SUMMARY
The challenges posed by diabetes during childhood require the nurse to find creative solutions based on knowledge of normal growth and development. Such innovative strategies will help the growing child and adolescent emerge with the emotional and technical skills necessary for a lifetime of successful diabetes self-care. Nurses play a key role in the support of children with diabetes and their families by providing support and appropriate resources, including referral to child specialists, diabetes camps, and other local resources. Establishing healthy lifestyle behaviors as a child will carry into adulthood.
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