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Diet Therapy and Phenylketonuria 395 61370_CH25_369_376.qxd 4/14/09 10:45 AM Page 376 376 PART IV DIET THERAPY AND CHILDHOOD DISEASES Mistkovitz, P., & Betancourt, M. (2005). The Doctor’s Seraphin, P. (2002). Mortality in patients with celiac dis- Guide to Gastrointestinal Health Preventing and ease. Nutrition Reviews, 60: 116–118. Treating Acid Reflux, Ulcers, Irritable Bowel Syndrome, Shils, M. E., & Shike, M. (Eds.). (2006). Modern Nutrition Diverticulitis, Celiac Disease, Colon Cancer, Pancrea- in Health and Disease (10th ed.). Philadelphia: titis, Cirrhosis, Hernias and More. Hoboken, NJ: Wiley. Lippincott, Williams and Wilkins. Nevin-Folino, N. L. (Ed.). (2003). Pediatric Manual of Clin- Stepniak, D. (2006). Enzymatic gluten detoxification: ical Dietetics. Chicago: American Dietetic Association. The proof of the pudding is in the eating. Trends in Niewinski, M. M. (2008). Advances in celiac disease and Biotechnology, 24: 433–434. gluten-free diet. Journal of American Dietetic Storsrud, S. (2003). Beneficial effects of oats in the Association, 108: 661–672. gluten-free diet of adults with special reference to nu- Paasche, C. L., Gorrill, L., & Stroon, B. (2004). Children trient status, symptoms and subjective experiences. with Special Needs in Early Childhood Settings: British Journal of Nutrition, 90: 101–107. Identification, Intervention, Inclusion. Clifton Park: Sverker, A. (2005). ‘Controlled by food’: Lived experiences NY: Thomson/Delmar. of celiac disease. Journal of Human Nutrition and Patrias, K., Willard, C. C., & Hamilton, F. A. (2004). Celiac Dietetics, 18: 171–180. Disease January 1986 to March 2004, 2382 citations. Sverker, A. (2007). Sharing life with a gluten-intolerant Bethesda, MD: United States National Library of person: The perspective of close relatives. Journal of Medicine, National Institutes of Health, Health & Human Nutrition and Dietetics, 20: 412–422. Human Services. Thomas, B., & Bishop, J. (Eds.). (2007). Manual of Patwari, A. K. (2005). Catch-up growth in children with Dietetic Practice (4th ed.). Ames, IA: Blackwell. late-diagnoses celiac disease. British Journal of Webster-Gandy, J., Madden, A., & Holdworth, M. (Eds.). Nutrition, 94: 437–442. (2006). Oxford Handbook of Nutrition and Dietetics. Peraaho, M. (2004). Oats can diversify a gluten-free diet Oxford, London: Oxford University Press. in celiac disease and dermatitis herpetiform. Journal Wiesser, H. (2008). The biochemical basis of celiac dis- of American Dietetic Association, 104: 1148–1150. ease. Cereal Chemistry, 85: 1–13. Rostom, A., Dube, C., Cranney, A., Saloojee, N., Sy, R., Williamson, D. (2002). Celiac disease. Molecular Bio- Garritty, C. et al. (Eds.). (2004). Celiac Disease. technology, 22: 293–299. Rockville, MD: Agency for Health Research and Quality. Yucel, B. (2006). Eating disorders and celiac disease: Samour, P. Q., & Helm, K. K. (Eds.). (2005). Handbook A case report. International Journal of Eating of Pediatric Nutrition (3rd ed.). Sudbury, MA: Jones Disorders, 39: 530–532. and Bartlett Publishers. 61370_CH26_377_382.qxd 4/15/09 11:56 AM Page 377 OUTLINE Objectives Glossary Background Information CHAPTER ACTIVITY 1: Dietary 26 Management of Congenital Heart Disease Major Considerations in Dietary Diet Therapy and Care Formulas and Regular Foods Congenital Heart Disease Managing Feeding Problems Discharge Procedures Nursing Implications Time for completion Progress Check on Activity 1 Activities: 1 hour 1 Optional examination: ⁄2 hour References OBJECTIVES Upon completion of this chapter, the student should be able to do the following: 1. Describe the effects of congenital heart disease upon the nutritional sta- tus of children. 2. List three reasons for growth retardation in a child with congenital heart disease. 3. Identify the four major nutritional problems to be considered for patients with congenital heart disease. 4. Explain the appropriate diet therapy for congenital heart disease, and give supporting rationale. 5. Describe formulas and supplements used for infants with congenital heart disease. 6. Evaluate the introduction of solid foods and precautions used when feeding. 7. Compare the feeding problems encountered in a child with a defective heart to those of normal children. 8. Describe methods of maintaining optimum nutritional status in the hos- pitalized child. 9. Teach parents and the child the principles of feeding and eating when congenital heart disease is present. 10. Describe appropriate discharge procedures. 377 61370_CH26_377_382.qxd 4/14/09 10:46 AM Page 378 378 PART IV DIET THERAPY AND CHILDHOOD DISEASES GLOSSARY are simple conditions that are easily fixed or need no treatment. Congenital: present at birth A small number of babies are born with complex con- Cyanotic: condition exhibiting bluish discoloration of the genital heart defects that need special medical attention skin and mucous membranes due to excessive con- soon after birth. Over the past few decades, the diagno- centrations of reduced hemoglobin or extensive oxy- sis and treatment of these complex defects has greatly gen extraction. improved. Dehydration: excessive loss of water from body tissue, ac- As a result, almost all children with complex heart de- companied by imbalance of electrolytes, especially fects grow to adulthood and can live active, productive sodium, potassium, and chloride (dehydration is of lives because their heart defects have been effectively particular concern among infants and young children). treated. Diuretic: a drug or other substance that promotes the Most people with complex heart defects continue to formation and excretion of urine. need special heart care throughout their lives. They may Milliequivalent (mEq): the number of grams of solute need to pay special attention to certain issues that their dissolved in one milliliter of normal solution. condition could affect, such as health insurance, employ- Milliliter: a metric unit of measurement of volume. ment, pregnancy and contraception, and preventing in- Milliosmol (mosm): a unit of measure representing the fection during routine health procedures. Today in the concentration of an ion in solution. United States, about 1 million adults are living with con- Renal: of or pertaining to the kidney. genital heart defects. Respiration (breathing): exchange of carbon dioxide and Many congenital heart defects have few or no symp- oxygen in the lungs. toms. A doctor may not even detect signs of a heart de- Respiratory distress: inability of the infant to make the fect during a physical exam. exchange, characterized by rapid breathing, grunting Some heart defects do have symptoms. These depend on expiration, and other severe symptoms. on the number and type of defects and how severe the de- Solute: any substance dissolved in a solution. fects are. Severe defects can cause symptoms, usually in newborn babies. These symptoms can include: BACKGROUND INFORMATION • Rapid breathing • Cyanosis (a bluish tint to the skin, lips, and fingernails) Part of the information in this section has been modified • Fatigue (tiredness) from the fact sheets on congenital heart disease pub- • Poor blood circulation lished and distributed by the National Institute of Health Congenital heart defects don’t cause chest pain or (www.nih.gov). other painful symptoms. Congenital heart defects are problems with the heart’s Abnormal blood flow through the heart caused by a structure that are present at birth. These defects can in- heart defect will make a certain sound. Your doctor can volve the interior walls of the heart, valves inside the hear this sound, called a heart murmur, with a stetho- heart, or the arteries and veins that carry blood to the scope. However, not all murmurs are a sign of a congen- heart or out to the body. Congenital heart defects change ital heart defect. Many healthy children have heart the normal flow of blood through the heart because some murmurs. part of the heart didn’t develop properly before birth. Normal growth and development depend on a normal There are many different types of congenital heart de- workload for the heart and normal flow of oxygen-rich fects. They range from simple defects with no symptoms blood to all parts of the body. Babies with congenital to complex defects with severe, life-threatening symp- heart defects may have cyanosis or tire easily when feed- toms. They include simple ones such as a hole in the in- ing. Sometimes they have both problems. As a result, terior walls of the heart that allows blood from the left they may not gain weight or grow as they should. and right sides of the heart to mix, or a narrowed valve Older children may get tired easily or short of breath that blocks the flow of blood to the lungs or other parts during exercise or activity. Many types of congenital heart of the body. defects cause the heart to work harder than it should. In Other defects are more complex. These include com- severe defects, this can lead to heart failure, a condition binations of simple defects, problems with the blood ves- in which the heart can’t pump blood strongly through- sels leading to and from the heart, and more serious out the body. Symptoms of heart failure include: abnormalities in how the heart develops. Congenital heart defects are the most common type of • Fatigue with exercise birth defect, affecting 8 of every 1000 newborns. Each • Shortness of breath year, more than 35,000 babies in the United States are • A buildup of blood and fluid in the lungs born with congenital heart defects. Most of these defects • A buildup of fluid in the feet, ankles,
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