About the Authors Patricia Rieser is a Certified Family Nurse Practitioner, formerly in the Division of Endocrinology, Department of Pediatrics, University of North Carolina at Chapel Hill (USA). Louis E. Underwood, M.D., is a Professor of Pediatrics, Division of Endocrinology, Department of Pediatrics, University of North Carolina at Chapel Hill (USA). Introduction 4 The Normal Pattern of Growth 6 Growth Before Birth 7 From Birth to Puberty 7 Pubertal Growth 8 Growth Charts 10 Recognition of Growth Problems 14 Evaluation of Growth Problems 16 Variations in the Normal Pattern of Growth 22 Shifting Channels in Infancy 23 Familial Short Stature 24 Constitutional Growth Delay 26 Abnormal Growth 28 Systemic Diseases 30 Endocrine Diseases 32 Congenital Conditions 34 Idiopathic Short Stature 36 Tall Stature 38 Psychological and Emotional Aspects of Short Stature 42 The Short School-Aged Child 44 The Short Child and Sports 46 Making Life Easier for the Short Child 47 The Human Growth Foundation 52 The Magic Foundation for Children’s Growth 53 Glossary 54 Additional Reading back cover Introduction Growth begins when a baby is conceived and continues throughout life. It is a complex process, influenced by a variety of factors that are only beginning to be understood. There is a wide range of “normal” for both height and weight. Not all short children have abnormal growth. As parents, we keep track of our children’s growth in many ways: We are reassured when the doctor says our baby is growing well; we notice how quickly new clothes are outgrown; we observe our child’s size in relation to that of classmates and playmates. If a child is not growing as expected or is lagging far behind classmates in size, most parents become concerned and seek the advice of their pediatrician or family physician. The first thing a concerned parent is likely to learn is that there is a wide range of “normal” for both height and weight, and the smallest child in the class may or may not have a medical problem relating to size. Not all short children have abnormal growth. There are about 1.27 million children in the United States who are shorter than 98% of children their age. Most of these boys and girls are normal in every way, but a few have problems that can have long-lasting effects on their health and growth if they are not diagnosed and treated. 4 Short stature is not the only cause for concern: A tall boy who stops growing deserves attention long before he stands out as the shortest child in his class. A girl who “shoots up” to stand inches taller than her classmates usually is perfectly normal, but she also may have a problem affecting growth. How can a parent tell whether to be concerned about a child’s size and growth? If there is a wide range of normal for height and weight, how does a parent know what is abnormal? This booklet answers these and other questions that parents often ask about growth and provides basic information about: • normal and abnormal patterns of growth (what to expect from infancy through adolescence); • recognition and evaluation of growth problems (how to tell if your child has a growth problem and what to do about it); • psychological and emotional aspects of short stature (how to understand and make life easier for the short child); and • information resources for parents of short children and for those interested in growth and growth problems. There are about 1.27 million children in the United States who are shorter than 98% of children their age. The Glossary on page 54 lists some of the new words used in this booklet, along with their definitions. These words will be highlighted the first time they appear. 5 The Normal Pattern of Growth Growth Before Birth A 2¹⁄₂-month-old fetus (a baby before it is born) weighs about one-tenth of an ounce (3 grams) and is 1¹⁄₄ inches (3 cm*) long. All of its body organs are present and are almost completely formed. At this point, the process of growth begins to speed up. By 5 months, the fetus may be growing as fast as 1 inch (2.5 cm) per week. If this incredible rate of growth were to continue, it would translate into a rate of more than 4 feet (1.3 meters) per year. Growth slows toward the end of pregnancy as the baby fills the uterus. At birth, full-term babies are usually 19 to 21 inches (48 to 53 cm) long and weigh from 6 to 8¹⁄₂ pounds (2.7 to 3.8 kg). From Birth to Puberty Average children grow about 5 inches (13 cm) between their first and second birthdays. As you can see by looking at Table I and Figure 1, growth is also rapid during the first year of life. Many infants grow as much as 10 inches (25 cm) and triple their birth weight by their first birthday. Growth slows between 1 and 2 years of age: Average children grow about 5 inches (13 cm) between their first and second birthdays. After 2 years of age, growth continues at a slower but steady rate of 2¹⁄₂ inches (6 cm) per year until about the age of 11 in girls and 13 in boys, when the growth spurt that goes along with adolescence usually begins. * Terms that appear in boldface are defined in the Glossary on page 54. 7 Table I: Normal Growth Rates During Childhood The pubertal growth spurt lasts about 2 years. Age Growth Rate (per year) birth to 1 year 1 to 2 years 2 years to puberty pubertal growth spurt girls boys 7 to 10 inches (18 to 25 cm) 4 to 5 inches (10 to 13 cm) 2 to 2¹⁄₂ inches (5 to 6 cm) 2¹⁄₂ to 4¹⁄₂ inches (6 to 11 cm) 3 to 5 inches (7 to 13 cm) Pubertal Growth The pubertal growth spurt lasts about 2 years and is accompanied by sexual development (growth of pubic hair, development of sex organs, and beginning of menstruation in girls). Normal growth stops when the growing ends of the bones fuse. This usually occurs between the ages of 13 to 15 years for girls and 14 to 17 years for boys. 8 Figure 1: Typical Pattern of Growth Rate From Birth Through Adolescence The typical pattern of growth for boys and girls from birth through adolescence. The growth rate (how fast the child is growing) is shown on the left side of the chart; the child’s age in years is shown along the bottom. Normal growth stops when the growing ends of the bones fuse. This usually occurs between the ages of 13 to 15 years for girls and 14 to 17 years for boys. 9 Growth Charts The most valuable tool for assessing a child’s growth is a well-kept growth chart made up of accurate height and weight measurements. A child’s height and weight should be measured and marked on his or her growth chart during visits to the doctor or healthcare provider. Children under the age of 3 years should be measured at least every 6 months; children over 3, every year. If there is any concern about growth, measurements should be made as often as every 3 months until a growth pattern becomes clear. The most widely used growth charts are constructed by measuring many boys and girls of all ages and breaking the range of their heights and weights into centiles, or percents. These centiles are represented on the growth charts (Figures 2 and 3) by the curved lines marked 5, 10, 25, 50, 75, 90, and 95. The spaces between the centile lines are called channels. Age in years is marked along the bottom of the chart. Height in inches and centimeters is marked along the sides. The 50th centile line is the average height for any given age. If there is any concern about growth, measurements should be made as often as every 3 months until a growth pattern becomes clear. 11 Figure 2: Boys’ Growth Chart Figure 3: Girls’ Growth Chart To use the chart, we find the child’s age along the bottom and draw a line going up, parallel to the two sides of the chart. Then we find the child’s height along the side and draw a line across, marking the point where the child’s age line and height line cross. By looking at the boys’ growth chart (Figure 2), for example, we can tell that a 5-year-old boy who is 43 inches (109.2 cm) tall is average-sized (50th centile) for his age (point A on the growth chart). A 5-year-old boy who is only 12 40 inches (101.6 cm) tall, however, falls at about the 5th centile line (point B on the growth chart). This means that if you measured 99 other boys who were exactly 5 years old, chances are that 95 of them would be taller than this 40-inch boy and 4 would be shorter. A growth chart shows us how a child’s height compares to that of other children of the same age. It also shows us a child’s growth pattern over time. After 2 years of age, most children maintain steady growth throughout childhood along one of the centile lines or channels. Children over 2 years of age who move away from their established growth curve deserve a thorough evaluation by a doctor, no matter how tall they are. Look at the girls’ growth chart (Figure 3, page 12). The child whose growth is shown on curve A is more likely to have a serious problem than the child whose growth is shown on curve B. The reason is that although Child B is shorter, she continues to grow as expected—in this case, along the 5th centile line. While Child A is still taller than 25% of children her age, the growth chart shows that her rate of growth has slowed seriously over the past 2 years. She needs to see her doctor promptly so the cause of her growth failure can be investigated. Children over 2 years of age who move away from their established growth curve deserve a thorough evaluation by a doctor, no matter how tall they are. 13 Recognition of Growth Problems Many parents are concerned about their children’s growth and want to learn more about growth and growth problems. They want to know when to worry and when not to worry about their children’s growth. The questions listed on the right can serve as guidelines for parents who are worried about their children’s growth.* While not necessarily indicating a problem, a “yes” answer to any of these questions signals a need to discuss the question with your child’s healthcare provider. Remember that one of the most important things parents can do to protect a child’s health and growth is to have their child examined regularly by a pediatrician or qualified healthcare provider. A child’s height and weight should be measured and marked on the child’s growth chart as part of every visit to the doctor. Researchers have found that girls are less likely than boys to be referred for evaluation of growth problems, perhaps because short stature is less of a social concern for girls. Poor growth can be a symptom of a serious medical condition, so any child whose height is below the 5th centile line on the growth chart or who moves away from a previously normal growth curve should be checked by a doctor. * This list is based in part on Human Growth Foundation (HGF) guidelines. For more information about HGF, please see page 52. • Is my child the shortest or tallest in the class? • Is my child unable to keep up with other children of the same age in play? • Is my child growing less than 2 inches or more than 3 inches a year? • Is my child showing signs of early sexual development (before age 7 in girls and before age 9 in boys)? • Has my 13-year-old girl or 15-year-old boy failed to show signs of sexual development? 15 Evaluation of Growth Problems The first thing parents should do if they are worried about their child’s growth is take the child to a pediatrician or healthcare provider. First, the doctor will decide whether the child’s size or growth curve is really a cause for concern. If it is, a long list of possible causes of short stature and growth failure must be considered. Table II lists some of the problems and diseases that can cause poor growth. An important thing to realize in looking at this long and complex list is that there are many possibilities that need to be considered, and it is helpful to approach the problem in an organized way. The pediatrician or healthcare provider may consult with a pediatric endocrinologist (a specialist in children’s hormone and growth problems) about the best way to assess a particular child. The doctor may need to measure your child’s height over a period of 6 to 12 months to evaluate the child’s present growth rate. These measurements should be plotted on a growth chart along with as many earlier measurements as possible. Your child’s doctor or school often will have records of yearly height and weight measurements. The doctor may ask many questions about your child’s health, diet, appetite, habits, and past illnesses and injuries. The doctor may ask many questions about your child’s health, diet, appetite, habits, and past illnesses and injuries. The doctor will also ask for information about the mother’s pregnancy, labor, and delivery because these may provide a clue to the cause of the child’s short stature. Questions about 17 your child’s progress in school, general mood, and home life are important in getting to know your child as a person, but also may shed light on your child’s growth problem. The doctor will ask about the health of other family members and will want to know the heights of parents, grandparents, close relatives, and brothers and sisters. Be sure to tell the doctor about any diseases or problems that run in the family, as well as any history of early or late puberty (growth spurt and sexual development) in family members. The doctor will perform a thorough physical examination to look for signs of the causes of short stature. 18 The doctor will perform a thorough physical examination to look for signs of many of the causes of short stature listed in Table II. X-rays or scans may be done to check on the condition of the pituitary gland (a small gland attached to the base of the brain). Blood tests can tell the doctor about the condition of the kidneys, bones, and thyroid gland. The amount of insulin-like growth factor I (IGF-I/somatomedin-c) in the blood may be checked. This is a substance that provides an indirect measure of the amount of growth hormone in the body. Table II: Possible Causes of Short Stature and Growth Failure Familial short stature —“heredity” (short parents are more likely to have short children) Constitutional growth delay — delayed puberty, delayed growth spurt, normal adult height Illnesses and diseases that affect the whole body (systemic diseases) • Nutritional deficiencies — undernutrition or malnutrition • Digestive tract disease — bowel disease • Kidney disease • Heart disease • Lung disease • Diabetes mellitus — high sugar • Severe stress or deprived environment Endocrine (hormone) diseases • Lack of thyroid hormone — hypothyroidism • Too much cortisol (stress hormone) — Cushing’s syndrome • Lack of growth hormone (GH) — GH deficiency Problems in the tissues where growth occurs (congenital conditions) • Intrauterine growth retardation — slow growth before birth caused by infections, smoking, alcohol use during pregnancy, or unknown factors • Chromosome abnormalities — Turner syndrome, other genetic syndromes • Skeletal abnormalities (bone diseases) — defects in size, shape, growth of bones Idiopathic — no cause can be found 19 Figure 4: X-ray Changes as Bones Develop 2¹⁄₂ yrs 8 yrs 14 yrs 20 An X-ray of the child’s hand and wrist may be made to check the child’s bone age. In some short children, the maturity of the bones lags behind the child’s actual age, and we say that the child has a delayed bone age. The bone age may be delayed for a variety of reasons, so it is not very helpful in finding the cause of short stature. It is, however, useful for determining the growth potential of the short child, and this is one time that delayed maturity is a good sign. A 9-year-old boy who has a bone age of 7 years, for example, has about 2 years more growth potential, or room to grow, than the average 9-year-old. This is because the development of his bones is more like a 7-year-old than like a 9-year-old. This child’s delayed bone age can “catch up” to his chronological age in less than 2 calendar years, however, especially after he enters puberty. Some of the changes that occur with the development of bones throughout childhood are shown in X-rays (Figure 4). By referring to special tables, the doctor can predict adult height based on the child’s present bone age and height. It is important to remember that these predictions are only educated guesses, and that the child’s adult height will be the result of many factors, including heights of parents, the child’s general health and state of nutrition, the age at which puberty begins, and the length and vigor of the pubertal growth spurt. In general, height predictions are more reliable as the child becomes older. Tests for growth hormone secretion should be performed after other causes of growth failure have been considered and ruled out. Growth hormone is secreted by the pituitary gland in quick bursts and does not last long in the blood, so checking a single blood sample for growth hormone is not likely to be helpful. Deep sleep, vigorous exercise, and certain drugs are known to stimulate the secretion of growth hormone. The amount of growth hormone in the bloodstream is measured by taking several small blood samples over a period of time. This may be done in the doctor’s office or during a brief hospital stay. The results of this test will show if the child’s growth problem is caused by a deficiency (lack) of growth hormone. The amount of testing that a child needs depends on what the doctor finds at each step of the evaluation. The amount of testing that a child needs depends on what the doctor finds at each step of the evaluation. A short child who is healthy and growing at a normal rate may be observed throughout childhood, while a child whose growth has stopped will need more involved testing. The evaluation process may make more sense if we take a closer look at some of the variations of the normal growth pattern and some of the causes of abnormal growth. 21 Variations in the Normal Pattern of Growth Although most children follow the usual pattern of growth described earlier, a small but significant number of children have growth patterns that differ from this typical model. Some of these less common but normal patterns of growth include shifting channels in infancy, familial short stature, constitutional growth delay, and familial tall stature (see pages 39-41 for a discussion of familial tall stature). Shifting Channels in Infancy It is not unusual for normal children under 2 years of age to cross centile lines in either direction. This happens because the factors that affect growth before birth are different from those that govern growth after birth. Babies who are small at birth often shift to a higher growth channel during the first few months of life, as they “catch up” to their own growth potential. On the other hand, large or average-sized babies who have short parents may have slower-than-expected growth during the first months of life as they settle into their own growth channel. A downward shift in growth during the first 1¹⁄₂ to 2 years of life may not be a cause for concern if the baby is healthy, thriving and has a good diet, and if height and weight are shifting together. It is not unusual for normal children under 2 years of age to cross centile lines in either direction. 23 At some point between the child’s first and second birthdays, the child should begin to maintain steady growth along the “new” centile channel. 24 The doctor who sees a baby like this may ask many questions about the baby’s habits and behavior and will perform a careful examination to make sure there are no physical problems. The baby’s height and weight should be measured carefully and marked on his or her growth chart every 3 months. At some point between the child’s first and second birthdays, the child should begin to maintain steady growth along the “new” centile channel. After this “new” growth curve is established, height and weight should be checked and plotted on the growth chart every 3 to 6 months until age 3 and every 6 to 12 months after that. As long as the child is healthy and growing at a normal rate, no special treatment is needed. Familial Short Stature Short parents tend to have short children. This is the result of genes that are passed from one generation to the next. The doctor evaluating a short child will need to know the heights of the child’s parents and other relatives. By taking the midpoint of the parents’ heights, the doctor can figure out a child’s expected range of height. The height of a short child with short parents often will fall within a normal range of height when this midpoint is taken into account. The term familial short stature applies to children who: • are small for their age (growth is at or below the 5th centile line on the growth chart); • come from short families; • are growing at a normal rate; and • do not have any signs or symptoms of diseases or conditions that affect growth. Children with familial short stature are likely to enter puberty and have a growth spurt at a normal age; their bone age will be the same as their chronological age (age in years), meaning that there is no delay in bone maturity. They can expect to reach an adult height about the same as that of their parents. Sometimes the diagnosis of familial short stature can be made only by excluding other causes of short stature. This is why the doctor may order some laboratory tests before making this diagnosis. Laboratory tests may be ordered before your physician makes a diagnosis. 25 Constitutional Growth Delay This type of growth pattern is one of the most frequent causes of parental concern about growth. Constitutional growth delay is the term used to describe children who: Constitutional growth delay is more common in boys than in girls. • are small for their age (growth is at or below the 5th centile line on the growth chart); • are growing at a normal or near normal rate; • have a delayed bone age (usually 1 to 4 years behind their chronological age); • are late entering puberty; and • do not have any signs or symptoms of diseases or conditions that affect growth. Constitutional growth delay is more common in boys than in girls. These children often are shorter than other children their age before they start school. If good growth records are available, one or more periods of slow growth during early childhood may be seen. These children do not catch up in their growth until after the pubertal growth spurt. They continue to grow at the slow, steady rate of childhood for longer than most of their friends. When they finally enter puberty at about age 15 for boys and about 14 for girls, they have a normal growth spurt and normal sexual development. 26 Their adult height usually is similar to that of their parents. Constitutional growth delay tends to run in families. Often there is a history of delayed growth and adolescence in the child’s parents and in other relatives. As with familial short stature, the diagnosis of constitutional growth delay may depend upon excluding other causes of short stature. To do that, the doctor may order some laboratory tests before making the diagnosis. The social problems faced by some children with constitutional growth delay result from their short stature and delayed sexual development. A 14-year-old boy with severe growth delay may look like a 9- or 10-year-old—a real disadvantage when it comes to making the football team or getting a date for the school dance. In many cases, support from parents and reassurance from the doctor that he is normal, that he can expect to mature sexually, and that he will reach a normal adult height is all that is needed to help an affected boy adjust. In some cases, where the teenage boy’s emotional pain is extreme, the doctor may consider using male hormones (androgens) to speed up the delayed timetable of puberty. These hormones cause a growth spurt and hasten the onset of sexual development, but they may speed up bone maturation. This means that the growing ends of the bones may fuse and growth may stop at an earlier age than if no treatment were given. The social problems faced by some children with constitutional growth delay result from their short stature and delayed sexual development. 27 Abnormal Growth Although most children who are short or tall are healthy and normal, there are children who have diseases or conditions that affect their growth. Remember that a child’s growth rate over time is a more important clue to the presence of a growth problem than his or her size. For this reason, regular, accurate measurements plotted on a growth chart are very important: A change in the child’s growth rate may provide the first hint of an underlying problem. The known causes of growth failure and short stature fall into 3 major groups: • systemic diseases (diseases that have effects on the whole body) • endocrine diseases (deficiencies or excesses A change in the child’s growth rate may provide the first hint of an underlying problem. of hormones) • congenital conditions (conditions present at birth). Sometimes no cause can be found; this is called idiopathic short stature. The purpose of this section is to provide an overview of the causes of growth failure. Sources of more specific information will be found on the back cover. Abnormal tall stature is most often caused by an endocrine disease or a genetic condition; these will be discussed on pages 32–36. 29 Systemic Diseases Systemic diseases are those which have effects on the whole body. They impair growth by affecting the child’s overall health and well-being. Any disease that is severe or poorly controlled can have a negative effect on a child’s growth. Any disease that is severe or poorly controlled can have a negative effect on a child’s growth. Nutritional problems are the most common cause of growth failure worldwide. Good nutrition is the cornerstone of normal growth. A balanced diet with the right number of calories and the right amount of protein is necessary to meet the needs of growing children. Several diseases of the digestive tract (gastrointestinal diseases) can cause food to be poorly absorbed, so that the body cannot use food properly. Failure to absorb nutrients and energy from food often leads to growth failure. Some of the symptoms of nutritional or bowel diseases include: • poor weight gain; • low weight for height; • frequent nausea, vomiting, diarrhea, or constipation; • abnormal bowel movements; and • severe bloating or gas when dairy products or other foods are eaten. 30 Treatment of digestive tract problems often involves a special diet. Children with nutritional problems usually grow normally after the problem is diagnosed and treated correctly. Diseases of the kidneys, heart, and lungs may lead to growth failure by causing the buildup of undesirable substances in the body and by interfering with the body’s use of nutrients and energy. Poor growth may be the first sign of chronic renal insufficiency (CRI), which is a permanent decline in kidney function. Children with CRI produce a normal amount of growth hormone, but do not use properly the growth hormone they make. The growth of many children with CRI can be improved by treating them with growth hormone. Other metabolic conditions can affect growth as well; for example, children with diabetes, or “high sugar,” sometimes grow poorly even when their blood sugar is fairly well controlled. Nutritional problems are the most common cause of growth failure worldwide. Good nutrition is the cornerstone of normal growth. Severe stress can cause growth failure. Children who are neglected or abused may stop growing for a while, then start growing again when their home life improves or when they are removed from the home. 31 Endocrine Diseases Endocrine diseases are those that involve deficiencies or excesses of hormones. A deficiency exists when there is not enough of a hormone in the body; excess means there is too much of a hormone in the body. Hypothyroidism, or deficiency of thyroid hormone, can halt growth completely and can occur at any time. Growth failure may be the first sign of this disease in childhood. Every child who is growing at a slower than normal rate should have a simple blood test to check for thyroid deficiency. Other symptoms that may appear later include: • lack of energy and concentration; • constipation; • dry, rough skin and hair; • hoarseness; • feeling cold when others are warm; and • coarsening (“thickening”) of facial features. Every child who is growing at a slower than normal rate should have a simple blood test to check for thyroid deficiency. This disease is treated easily by taking a thyroid pill every day. The child with growth arrest from hypothyroidism usually “catches up” and returns to his or her previous growth channel after treatment begins. 32 Cortisol (stress hormone) excess, or Cushing’s syndrome, is a less common cause of growth failure in children. In this disorder, weight often increases while growth in height slows. Too much cortisol also causes thinning of the skin, easy bruising, softening of the bones, and muscle wasting and weakness. It may be caused by overactivity of the pituitary gland, the presence of a tumor in the adrenal glands (where cortisol is made), or over-medication with cortisol pills used to treat asthma and other diseases. A blood test is used to check the amount of cortisol in the blood. If there is too much cortisol, additional tests are needed to find out what is causing the excess. The treatment depends on the cause. Early diagnosis of this problem is important because the longer it lasts, the less chance the child has of returning to a normal growth channel. Although growth hormone (GH) deficiency is uncommon, it may occur at any time from infancy through childhood. Although growth hormone (GH) deficiency is uncommon, it may occur at any time from infancy through childhood. There are many causes of GH deficiency. Most involve damage to the pituitary gland or a specialized part of the brain that controls the pituitary. In childhood, a common sign of GH deficiency is a marked slowing of growth, usually to less than 2 inches (5 cm) a year. Many children with GH deficiency have normal body proportions and normal intelligence; some may be overweight for height or have problems with low blood sugar. GH deficiency is diagnosed by doing special tests to look for GH in the blood. It is treated by 33 giving the affected child injections of GH until the child reaches his or her adult height or until the growing ends of the bones fuse. Childhood GH deficiency may continue into adulthood. Childhood GH deficiency may continue into adulthood. Because GH affects body metabolism after growth has stopped, physicians should inform their teen-aged and adult patients that they may benefit from continued GH therapy throughout adulthood. Adults with GH deficiency may have more fat and less muscle (lean body) mass than unaffected adults. Lipid (fat and cholesterol) metabolism may be affected, and there is an increased risk of diseases affecting the heart and blood vessels. Some adults with GH deficiency may have low energy and other psychological and social problems that can affect their quality of life. Congenital Conditions Congenital conditions are present at birth and result from problems that occur before the baby is born. A number of factors can affect the mother, the fetus, or the placenta (the organ in the uterus that links mother and fetus) to cause intrauterine growth retardation, or slow growth within the uterus. Babies who are born prematurely (early) but who are normal size for their age usually “catch up” and fall within the 34 normal range for height and weight by 2 to 3 years of age if they are in good health. Some full-term babies are smaller than expected at birth. If a full-term baby weighs over 4¹⁄₂ pounds (2 kg) and does not have any other problems, there is a good chance that he or she will “catch up” and be of normal size by 2 to 3 years of age. Full-term babies who are very small at birth (under 4 pounds or 1.8 kg) are more likely to remain small throughout life. Many genetic syndromes (groups of signs and symptoms of an abnormality) are associated with short stature and growth problems. One of the most common is Turner syndrome, which occurs only in girls. Girls with Turner syndrome have a missing or misshapen sex chromosome (“package” of genes) in many of their cells. These girls have underdeveloped ovaries (female sex glands where eggs and female hormones normally are produced), they are short as adults, and their intelligence is usually normal. Turner syndrome is diagnosed by doing a special blood test (karyotype) to look for damaged or missing sex chromosomes. Growth failure may be the only sign of this condition. The results of many studies show that GH injections increase the growth rate of girls with Turner syndrome and improve their adult height. Female hormones (estrogens) must be given to bring about full sexual Because GH affects body metabolism after growth has stopped, physicians should inform their teen-aged and adult patients that they may benefit from continued GH therapy throughout adulthood. 35 development at the time of puberty because the girl’s underdeveloped ovaries will not usually produce these hormones. There are more than 100 bone diseases that can affect height and growth. There are more than 100 bone diseases that can affect height and growth. Children with one of these skeletal dysplasias, or chondrodystrophies, are very short and have abnormal body proportions; intelligence is usually normal. One of the most common genetic bone disorders is achondroplasia, a disease in which a child’s arms and legs are short in proportion to body length; the head is often large and the trunk is normal size. Skeletal dysplasias involve abnormal formation and growth of cartilage and bone. Although no hormonal treatment is proven to be effective in increasing adult height, a surgical method for lengthening of the legs has been applied with some success. It is important to try to identify the type of disorder present because this information is useful in anticipating related medical problems and in providing genetic counseling. Idiopathic Short Stature The term idiopathic short stature is used to describe short children who do not fit into any of the categories described above and in whom results of lab tests are normal. Most will be below the normal range for height as adults, and below what would be expected given their parents' heights. The diagnosis of idiopathic short stature is applied to the 36 child who has had a comprehensive evaluation for his/her growth disorder and no cause has been found. Not all causes of short stature and growth failure can be treated, but parents and doctors should be alert for changes that may signal the onset of a treatable growth problem. Whether medical treatment is recommended or parents are reassured that their short child is healthy and normal, emotional problems related to size may exist. It is just as important to recognize and treat these problems as it is to recognize and treat the child’s physical problems; increased height does not automatically make a child’s challenges disappear. Attention to a child’s psychological well-being should be part of every medical evaluation and treatment plan. 37 Tall Stature By definition, there are as many children above the 95th centile in height as there are below the 5th centile. Most tall children have tall parents, and few have reason to worry about their height. The term familial tall stature applies to children who: • are tall for their age (growth is at or above the 95th centile line on the growth chart); • come from tall families; • are growing at a normal rate; and • do not have any signs or symptoms of diseases or conditions that affect growth. Tall boys rarely complain about their size, but tall girls may feel ill at ease or out of place towering over their friends. Support and reassurance that many of the boys will catch up later may be all that is needed to help the tall girl feel more comfortable with her size. Adult height can be predicted on the basis of bone maturity (bone age determined by X-ray) and present height. If predicted adult height is over 6 feet and the preteen girl is suffering a great deal because of her size, some doctors would consider using female hormones (estrogens) to hasten the onset of puberty and decrease adult height. These female hormones may have undesirable side effects, however, so this treatment should be considered By definition, there are as many children above the 95th centile in height as there are below the 5th centile. 39 only in extreme cases, after all known and potential side effects are evaluated and thoroughly discussed with the girl and her family. Children who are above the 95th centile in height or who are growing at an abnormally rapid rate should be checked by a doctor. Abnormal tall stature is most often caused by an endocrine disease or a genetic condition. Abnormal tall stature is most often caused by an endocrine disease or a genetic condition. 40 There are several endocrine causes of abnormal tall stature and rapid growth. Growth hormone excess may be caused by a small tumor in the pituitary gland. It is treated by removing the tumor and watching carefully for signs of recurrence. Children with GH excess usually are tall as adults. Sexual precocity, or early puberty, is a more common cause of unusually fast growth. In this condition, rapid growth is accompanied by early sexual development and advanced bone maturation. True sexual precocity is not the same as early development of pubic hair or breasts (in girls), which may be normal. However, any girl under 7 years or any boy under 9 years who shows signs of sexual development (growth of pubic hair; enlargement of breasts, penis, or scrotum; deepening of voice) should be checked by a doctor. These children may be tall at first, but early puberty causes early closure of the growth plates of the bones, so the children will stop growing at a younger age and be short as adults. It is important to find and treat the cause of early sexual development. Certain drugs may be used to try to halt early puberty and increase growth potential. Genetic conditions that cause abnormal tall stature are rare. These conditions usually are associated with a set of distinctive physical traits, which often includes abnormal body proportions. Although our society is more accepting of tall stature than of short stature, children who are tall for their age may have emotional problems related to their size. Like short children, they stand out as different from their classmates and may be the victims of teasing and name-calling. Family, teachers, and friends may have a difficult time treating the tall child according to age rather than size; they may expect more of the child because he or she looks older. Some of the comments in the following section on psychological and emotional aspects of short stature apply just as well to children who are very tall. Although our society is more accepting of tall stature than of short stature, children who are tall for their age may have emotional problems related to their size. 41 Psychological and Emotional Aspects of Short Stature Since children who are short often face teasing and other forms of emotional stress, they may have problems coping and adjusting. The following story highlights some of the problems any short children may face, regardless of their diagnosis. Although we sometimes refer to boys and use male pronouns (he, his) in this section, the discussion applies to both girls and boys. Josh is a 12-year-old boy with constitutional growth delay. Although he has grown at a normal rate throughout childhood, his height is below the 5th centile line on the growth chart. His bone age is delayed by 2 to 3 years, so he is likely to reach a normal adult height. He has always been the smallest child in his class, and the size difference is getting more noticeable as some of his classmates begin their growth spurts: Josh looks more like a 4th grader than a 7th grader. He is having school problems this year, after moving into a new school. His teachers report that “he’s either a clown or a bully in class, and he just does not pay attention.” He likes sports and is good at soccer, but the coach does not want to let him try out for the team—he is afraid Josh will get hurt. The older boys at school sometimes pick him up and carry him around, calling him “Peewee” and “Squirt.” He has started spending a lot of time alone in his room and does not seem interested in anything. After his last visit to the doctor, he said, “I’m sick of hearing how tall I’ll be in 10 years. I’m a shrimp now, and that is all that matters.” 43 Our society places positive emphasis on height. Children or adults who are short may be the victims of teasing, name-calling, cruelty, and prejudice. Family, teachers, and other children have a difficult time treating a short child according to age rather than size. 44 Although most short children adapt well to their size and do not have severe psychological problems because of being short, Josh’s story is not unusual. Our society places positive emphasis on height. Children or adults who are short may be the victims of teasing, name-calling, cruelty, and prejudice. Different-aged children will have different concerns and problems depending on their level of development and maturity. For instance, preschoolers may worry that it is their fault that they are not growing. Regression (acting like a younger child) may be seen in school-aged children, while teenagers are likely to be concerned about dating, driving, and discrimination in school, sports, and the job market. Any child may deal with these frustrations by becoming depressed (withdrawn and unhappy) or by “acting out” (behaving in an angry, aggressive, hurtful way). Whatever the behavior, it is important for parents to try to understand the feelings behind the child’s actions. If you feel things are getting out of control or are more than you can handle, talk to your child’s doctor or nurse. They can give you some suggestions or direct you to someone who can help. The Short School-Aged Child Josh is experiencing some of the common and predictable problems faced by school-aged children who are short. Family, teachers, and other children have a difficult time treating a short child according to age rather than size. Sometimes discussing this tendency with teachers and friends (young and old) may be helpful in overcoming it. Although Josh looks like a 9-year-old, he is 12. Being treated as if he were 9 makes it easy for Josh to act younger than he really is—and perhaps he feels safer and more secure in a dependent, immature role. Acting younger does not make him happier, but it is safer because less is expected of him. Facing challenges is an important part of growing up and, like any child, the short child needs to have chances to succeed as well as to fail. There is a natural tendency for parents to shelter their short child from the outside world, but children need not be shielded completely from reality. A healthy approach is to provide love, encouragement, support, and skills that will help the child deal with the “big” world and develop self-confidence and a sense of responsibility. Focus on your child’s strengths: Look for things the child does well and give him the chance to do his best. Be excited about her achievements, whatever they are. Focus on your child’s strengths: Look for things the child does well and give him the chance to do his best. Be excited about her achievements, whatever they are. One of the reasons Josh is having school problems this year is that he has just transferred to a different school and has to face new teachers and new classmates who are not sure how to act around him. If a child is in the same school for several 45 Sports are an important part of life for many children, and there is no reason why short children cannot participate and excel in athletic activities. Short children, like other children, should be encouraged to find a sport they enjoy, work hard at it, and do their best. 46 years, he often will develop a special role in the class and the other children will get to know him and stop thinking of him as different. In other words, he becomes accepted. A change (moving, transferring to another school) is like starting all over again with teasing and name-calling. Some children subjected to this kind of treatment just give up, withdraw, and do not make new friends. Sometimes an older or bigger child serves as “protector” or “bodyguard” for the small child. This may be helpful for the short child, as long as he does not depend on his “bodyguard” to fight all his battles. The Short Child and Sports Another issue facing Josh and his family involves sports. Sports are an important part of life for many children, and there is no reason why short children cannot participate and excel in athletic activities. Many sports require intelligence, strength, and endurance more than tall stature. Soccer, tennis, karate, judo, gymnastics, wrestling, skiing, skating, squash, handball, racquetball, horseback riding, horse racing, bowling, golf, track, swimming—there is a long list of activities that give short children and adults a chance to compete successfully. Short children, like other children, should be encouraged to find a sport they enjoy, work hard at it, and do their best. Making Life Easier for the Short Child The most important step in making life easier for a short child is also the hardest, and that is recognizing and accepting the child’s size. Children need to feel loved and valued just as they are, whether short or tall, thin or heavy. Parents who constantly focus on a child’s height (or lack of it) may make the child feel that it is not okay to be the way he or she is. Once parents come to terms with their child’s size, they can talk about it with the child in an open and realistic way. Children may have a hard time putting their feelings into words, but that does not mean they don’t have feelings about being small. Short children know they are short by the time they reach school age, if not before. The short child may be relieved to have parents who can help him to identify and express his feelings about being different. In addition to conveying a basic feeling of acceptance, there are some very practical ways a parent can help to make life easier for a short child. The following ideas, based in part on a section in Kate Phifer’s book, Growing Up Small,* may be helpful. The most important step in making life easier for a short child is also the hardest, and that is recognizing and accepting the child’s size. • Make the physical environment at home as comfortable as possible for the child. Walk through the child’s daily routine and see how things look from a lower eye level. This is something parents and child can do together. * You will find this book listed on the back cover. 47 Teach your child ways of coping with the physical environment away from home. 48 It is hard, for example, to hang up your coat if you can’t reach the hanger. Lowering rods and hooks in closets solves this problem. Children may do a better job of combing their hair if there is a mirror placed so they can see more than the top of their head. Steady footstools or stepladders throughout the house can make a big difference in how easily a child can take care of himself. Whatever changes you make around the house, make them as simply and quickly as you can. Don’t make a “big deal” out of what you are doing or make the child feel that he is causing trouble by being small. • Teach your child ways of coping with the physical environment away from home. This may include practice in “speaking up” when he is stuck behind a high counter or needs help reaching a doorknob. Help your child think about situations in public that cause awkwardness or embarrassment and then help the child to come up with ideas for handling those situations. Help your child rehearse a response (“role-play”) until he feels ready to try it out in the real world to see how it works. It may take a few tries, but it should be worth the effort. • Help your child learn some of the social skills that may be taken for granted. Take your child with you when you go out and teach him how to order food in a restaurant, pay the cashier at the store, or ask for the right size in the shoe department. Have your child’s friends over often and help your child make them feel welcome. Encourage your child to join in group activities if he would like to. It may be hard at first, but it often gets easier as the children get to know each other. • Discuss your child’s size with teachers and friends (young and old). Explain that it is important that your child be treated according to age, not size. It is hard to resist the urge to carry around a cute and cuddly 5-year-old who looks like a 3-year-old, but it is important to treat that child like any other 5-year-old. This is true at home as well. • Helping with chores and jobs around the house is part of growing up for many children. It helps children develop a sense of responsibility and gain a feeling of pride and satisfaction. Short children don’t need to be excused from sharing in household chores. With a little creativity, a short child should be able to do almost anything around the house, the yard, or the school, comfortably and safely. Help your child learn some of the social skills that may be taken for granted. • Dress your child according to age, not size, even if it sometimes means having clothes altered. A 6-year-old who is dressed in toddler clothes, complete with snap seams on the legs, most likely is going to be treated like a toddler. Going along with fads is part of being a teenager. Learning to sew may be one answer for the teen who can’t find the right style in the right size. 49 • Encourage your child to learn skills that allow for competition, no matter what his size. Music, drama, dancing lessons, 4-H clubs, sport—there are many activities that give children a chance to develop special skills and learn to work and play with others. Local schools and recreation departments are good sources of information about activities for children. To Sum Up: Local schools and recreation departments are good sources of information about activities for children. • Recognize and accept your child’s size. • Show respect for your child by treating him according to age, not size. • Teach your child useful skills for dealing with the “big” world. Show respect for your child by treating him according to age, not size, and talk to your child openly and realistically. • Talk to your child openly and realistically. • Focus on your child’s strengths. • Give your child chances to succeed and fail, and give support in failures as well as in successes. • Seek professional help if you or your child need it (from your physician, a psychologist, or the local mental health center). 50 • Even if the child’s short stature is due to a treatable medical problem, do not rely on catch-up growth to solve problems of psychological adjustment, if these exist. Even catch-up growth is a gradual process. Support your child in actively coping with the challenges that he or she is facing. Raising a happy, healthy, well-adjusted child is a challenge to every parent. The challenge is even greater if the child stands out as “different” because of size, but greater challenges can lead to greater rewards. Seek professional help if you or your child need it by contacting your physician, a psychologist, or the local mental health center. 51 The Human Growth Foundation Families with short children or children with growth problems should be aware of the services of the Human Growth Foundation (HGF). HGF is a nonprofit national organization of families of short children and others who are interested in growth problems. Its goals include support of research into normal and abnormal growth, parent education and service, education of healthcare professionals and the public, and advocacy on behalf of affected children and families. Chapters are located in major cities across the country. More information about the services of HGF and local chapter addresses can be obtained by writing to this address: Human Growth Foundation 997 Glen Cove Avenue Glen Head, New York 11545 Toll-free: (800) 451-6434 www.hgfound.org 52 The Magic Foundation for Children’s Growth MAGIC provides educational support to families of children with growth-related disorders. A quarterly newsletter, national networking, annual national convention, educational brochures, and videos are some of the programs available. Specialty divisions are available for a variety of growth disorders. For additional information and a copy of our brochure, newsletter, and upcoming convention details, please contact MAGIC at: The MAGIC Foundation 1327 N. Harlem Avenue Oak Park, IL 60302 Toll-free: (800) 3-MAGIC 3 Tel: (708) 383-0808 Fax: (708) 383-0899 www.magicfoundation.org 53 Glossary • adolescence — The teenage years, when the child is becoming an adult physically and mentally (see puberty). • bone age — Refers to the stage of development or maturity of the bones. In most children, bone age will be about the same as chronological (actual) age, but in some children it may be advanced (ahead) or delayed (behind). It is measured by taking an X-ray, usually of the hand and wrist, to look at the bones and compare them to standards for boys and girls of various ages. • centile or percentile — A number based on dividing something into 100 parts, in this case, a group of children of the same age. The centile number tells what percent of children of that age are taller or shorter than the child being measured. • chondrodystrophies — Conditions involving abnormal development of the cartilage (tissue that develops into bone); sometimes called skeletal dysplasias (conditions involving abnormal development of bones). • cm (centimeter) — A unit to measure length in the metric system. 1 cm = 0.4 inches; 2.54 cm = 1 inch. • deficiency — Not enough of something, in this case, a hormone. • genes — Chemical units inherited from parents. Genes determine the specific characteristics of offspring. • growth hormone — A hormone secreted by the pituitary gland which causes physical growth. 54 • hormones — Chemicals secreted into the bloodstream in small amounts by glands throughout the body. Hormones “set in motion” many life processes—growth, puberty, reproduction, metabolism, self-preservation. • idiopathic — Occurring without a known cause. • insulin-like growth factor I (IGF-I/somatomedin-c) — A chemical produced by the liver and other tissues in response to growth hormone (GH). It is the “middleman” between GH and the changes in cells that lead to growth. • kg (kilogram) — A unit to measure weight in the metric system. 1 kg = 2.2 pounds; 0.45 kg = 1 pound. • pituitary gland — A small gland attached by a stalk to the base of the brain; it secretes hormones that control other glands and regulate growth. It is sometimes called the “master gland.” • puberty — Often used to mean the same thing as adolescence, but it can be used to describe the time when the physical changes of adolescence occur. • syndrome — A set of features or symptoms often occurring together and believed to stem from the same cause. 55 Additional Reading If you are interested in learning more about normal growth, growth problems, or the psychological effects of being “different,” these are some books you may find helpful. Briggs, Dorothy. Your Child’s Self-Esteem. NY: Doubleday, 1975. Available in paperback and at public libraries. For parents interested in finding ways to help their children feel good about themselves. Fraiberg, Selma. The Magic Years. NY: Charles Scribner’s Sons, 1959. Available in paperback and at public libraries. A classic book on “understanding and handling the problems of early childhood.” Although it does not deal with short stature specifically, it is useful in gaining understanding of how young children think, and may help you deal with the problems of having a young short child. Human Growth Foundation. Series of booklets designed for parents on the following topics: Short & OK: A Guide For Parents of Short Children; Patterns of Growth; Growth Hormone Deficiency; Growth Hormone Treatment: What To Expect; Turner Syndrome; Achondroplasia; Intrauterine Growth Retardation. Available from HGF by writing to them at: 997 Glen Cove Avenue, Glen Head, NY, 11545 Phifer, Kate. Growing Up Small: A Handbook for Short People. Middlebury, VT: Paul Eriksson, 1979. Available in hardback. “How parents and others can help children understand it, cope with it, take advantage of it, and maybe even cure it.” Phifer, Kate. Tall and Small: A Book About Height. NY: Walker and Company, 1987. Available in hardback. A book about normal growth and puberty and variations from the normal pattern of development. Aimed at the middle and high school audience; contains tips for handling school and peer problems related to height. Silverstein, Shel. The Missing Piece. NY: Harper and Row, Publishers, 1976. Available in paperback and at public libraries. This children’s book (for all ages) is about a wheel that is missing a piece and how it learns to feel good about itself even though (or because) it is different from other wheels. Spier, Peter. People. NY: Doubleday Publishing, 1980. Available in paperback and at public libraries. This book for 4- to 8-year-olds helps them learn about differences and similarities among people. Tanner, James. Fetus Into Man: Physical Growth from Conception to Maturity. Cambridge, MA: Harvard University Press, 1978. Available in hardback. A brief and understandable account of human physical growth; highly recommended for the interested parent. Tanner, James and Taylor, Gordon. Growth. Alexandria, VA: TimeLife Publishers, 1981. Available in hardback; may be available in public libraries. One volume in the Time-Life Science Library; very readable. The contents of this book and related websites are not intended for the purpose of disease diagnosis or a substitute for information that is provided to you by your physician. You should always discuss your individual symptoms and any questions you have with your physician. Genentech, Inc. is not responsible for the accuracy of the information contained on third-party websites and does not recommend or endorse the content provided on these websites. Provided as an educational service by Human Growth Foundation www.hgfound.org .O. F.P The MAGIC Foundation www.magicfoundation.org ©2014 Genentech USA, Inc., So. San Francisco, CA NTR/093014/0040 11/14
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