PPC Nutrition2006

Nutrition Perspectivesin Children and Youth with Special Health Care Needs (CYSHCN): 

Nutrition Perspectives in Children and Youth with Special Health Care Needs (CYSHCN) Corine Neumiller, RD Pediatric Pulmonary Center Tucson, Arizona 2006

Learning Objectives: 

Describe characteristics of CYSHCN Be familiar with various assessment techniques Identify nutrition concerns for CYSHCN Asthma, Cystic Fibrosis Understand family-centered approaches to developing a nutrition care plan Review family centered nutrition care through case study Learning Objectives

Definition: 

Definition Children and Youth with Special Health Care Needs (CYSHCN) Children who have or are at risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally. MCHB, Div of Services for CSHCN

Who are they?: 

Who are they? Age: Birth - 21 years Long-term condition (minimum 12 months) Require complex care Wide range of conditions Cerebral palsy, developmental delay, ADHD, depression, asthma, sickle cell anemia, cystic fibrosis, technology dependent

National Survey: 

National Survey 9.4 million children (12.8%) In Arizona: 10.8% One in every five households U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2001. Rockville, Maryland

Common Perspective: 

Common Perspective They all share the consequences of their conditions, such as reliance on medications or therapies, special educational services, or assistive devices or equipment.

Nutritional Consequences: 

Nutritional Consequences On average, 40% of CYSHCN at risk for nutrition problems Early nutrition screening 92% met one criterion for nutrition referral 68% met two or more criterion

Nutritional Problems: 

Nutritional Problems Normal Nutrition Over Under Alterations in growth and activity Poor absorption, metabolism, excretion Drug/nutrient interactions Feeding problems

Assessing Nutrition Status: 

Assessing Nutrition Status

Nutritional Status: 

Nutritional Status Weight Primary indicator for over-/under- nutrition Growth chart Reflection of growth pattern Technique Key to consistency and accuracy

Growth & Development: 

Growth & Development Height Slower response to nutrition changes Indicator of undernutrition when measurements continually trend down Technique Recumbent length (0-36 mo) Standing height (2-20 yrs)

Growth & Development: 

Growth & Development Head Circumference Last indicator to be affected by undernutrition < 3 yr old: Possible nutritional insult with downtrends, accompanied by decreases in weight and height > 3 yr old: Decreases are generally not nutrition-related See CDC web site to download charts (http://www.cdc.gov/growthcharts) FOR MORE INFO...

Assessment Skills: 

Assessment Skills Subjective Global Assessment (SGA) Simple technique for assessing nutritional status Evaluates body fat and muscle stores Involves visual review of physical body May be applied by any healthcare worker

SGA : 

SGA Fat Stores Eye fat pad Cheek pad Tricep pinch Detsky, A, et al. JPEN. 11:8, Jan/Feb, 1987. REFERENCE:

SGA: 

SGA Muscle Stores Temple Clavicle Shoulder Scapula Upper joint area Interosseus area

Nutrition Histories: 

Nutrition Histories Interview that reveals dietary habits Quick tool for assessing one’s ability to meet, fail, or exceed nutritional needs

Slide18: 

What would you ask? What is the home life/meal pattern? How much is consumed? Who is present at mealtimes? Food allergies or intolerances? Is the child interested in eating? Any weight change perceived? Any problems with chewing, swallowing, gagging or choking? What religious or cultural backgrounds are present?

Childhood Obesity: 

Childhood Obesity

National Trends: 

Overweight/obesity increasing at an alarming rate More children gaining an unhealthy amount of weight heart disease, asthma, high blood pressure, diabetes, etc DEFINITION: BMI Percentiles (2 to 20 y.o.) 85-95th %ile = At risk >95th%ile = Overweight National Trends

Trends in Overweight* for Children: 

Trends in Overweight* for Children Percent *BMI ≥ 95th percentile of BMI-for-age, 2000 CDC growth charts SOURCE: NHES II & III, NHANES I, II, & III, NHANES 1999-2002; Ogden et al., JAMA 2002; Hedley et al., JAMA 2004 Boys 6-11 y Girls 6-11 y Boys 12-19 y Girls 12-19 y

Slide22: 

1995 Obesity Trends* Among U.S. Adults BRFSS, 1990, 1995, 2005 (*BMI 30, or about 30 lbs overweight for 5’4” person) 2005 1990 No Data <10% 10%–14% 15%–19% 20%–24% 25%–29% ≥30%

Obesity Trends* Among U.S. AdultsBRFSS, 1985: 

Obesity Trends* Among U.S. Adults BRFSS, 1985 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% Source: WWW.CDC (BRFSS, CDC)

Obesity Trends* Among U.S. AdultsBRFSS, 1986: 

Obesity Trends* Among U.S. Adults BRFSS, 1986 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

Obesity Trends* Among U.S. AdultsBRFSS, 1987: 

Obesity Trends* Among U.S. Adults BRFSS, 1987 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

Obesity Trends* Among U.S. AdultsBRFSS, 1988: 

Obesity Trends* Among U.S. Adults BRFSS, 1988 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

Obesity Trends* Among U.S. AdultsBRFSS, 1989: 

Obesity Trends* Among U.S. Adults BRFSS, 1989 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

Obesity Trends* Among U.S. AdultsBRFSS, 1990: 

Obesity Trends* Among U.S. Adults BRFSS, 1990 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

Obesity Trends* Among U.S. AdultsBRFSS, 1991: 

Obesity Trends* Among U.S. Adults BRFSS, 1991 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1992: 

Obesity Trends* Among U.S. Adults BRFSS, 1992 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1993: 

Obesity Trends* Among U.S. Adults BRFSS, 1993 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1994: 

Obesity Trends* Among U.S. Adults BRFSS, 1994 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1995: 

Obesity Trends* Among U.S. Adults BRFSS, 1995 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1996: 

Obesity Trends* Among U.S. Adults BRFSS, 1996 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19%

Obesity Trends* Among U.S. AdultsBRFSS, 1997: 

Obesity Trends* Among U.S. Adults BRFSS, 1997 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% ≥20%

Obesity Trends* Among U.S. AdultsBRFSS, 1998: 

Obesity Trends* Among U.S. Adults BRFSS, 1998 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% ≥20%

Obesity Trends* Among U.S. AdultsBRFSS, 1999: 

Obesity Trends* Among U.S. Adults BRFSS, 1999 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% ≥20%

Obesity Trends* Among U.S. AdultsBRFSS, 2000: 

Obesity Trends* Among U.S. Adults BRFSS, 2000 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% ≥20%

Obesity Trends* Among U.S. AdultsBRFSS, 2001: 

Obesity Trends* Among U.S. Adults BRFSS, 2001 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% 20%–24% ≥25%

Slide40: 

(*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% 20%–24% ≥25% Obesity Trends* Among U.S. Adults BRFSS, 2002

Obesity Trends* Among U.S. AdultsBRFSS, 2003: 

Obesity Trends* Among U.S. Adults BRFSS, 2003 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% 20%–24% ≥25%

Obesity Trends* Among U.S. AdultsBRFSS, 2004: 

Obesity Trends* Among U.S. Adults BRFSS, 2004 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% 20%–24% ≥25%

Obesity Trends* Among U.S. AdultsBRFSS, 2005: 

Obesity Trends* Among U.S. Adults BRFSS, 2005 (*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14% 15%–19% 20%–24% 25%–29% ≥30%

Something’s wrong...: 

Something’s wrong...

Why the increase?: 

Why the increase? % Change in Mean Intake of Beverages, Children 6-11 Years Old Carbonated soda Milk Fruit juice Fruit drinks 0% % increase % decrease -39% 54% 69% 137% SOURCE: L. Cleveland USDA; NFCS 1977-78 and WWEIA, NHANES 2001-02, 1 day

Why the increase?: 

Why the increase? % Change in Mean Intake Foods, Children 6-11 Years Old Fried potato Savory grain snacks Grain mixed dishes Pizza Candy Vegetable -43% 320% 144% 425% 18% 180% SOURCE: L. Cleveland USDA; NFCS 1977-78 and WWEIA, NHANES 2001-02, 1 day

National Trends: 

National Trends BEGIN EARLY intervention Prevention of excess weight gain may decrease asthma-related morbidity Obesity will soon overtake tobacco as chief cause of preventable deaths in US -CDC

Asthma and Obesity: 

Asthma and Obesity Simultaneous increases in obesity and asthma What came first: Obesity or Asthma?

Study Lessons : 

Study Lessons Asthma - like symptoms are higher in girls who become overweight during the school years (Rodriguez et al 2/ 01) Strong association between overweight status and asthma prevalence in females. Levels of obesity are associated with asthma symptoms regardless of ethnicity (Figueroa-Munoz, 2/ 01) Weight loss reduces airway obstruction, improves lung function (Hakala, Stenius, 11/00)

Treatment: 

Treatment Diet Management Physical Activity Behavior Modification

Nutrition Therapy: 

Nutrition Therapy Diet Consume a healthy, balanced diet Avoid excessive salt, fat, sweets Avoid skipping meals Emphasize fluid intake Change behavior if weight loss needed

Supplemental Nutrients: 

Calcium For increased risk of growth delay with hi dose corticosteroids Absorption enhanced with 800 IU Vit D Foods rich in calcium Dairy, fortified orange juice, tofu, raisins, sardines, salmon with bones, dark green, leafy vegetables, calcium supplementation, mineral water Supplemental Nutrients

Supplemental Nutrients: 

Antioxidants Vitamins A,C, E = may have protective effect Low dietary intake = ?decreased lung function Omega 3 Fatty Acids May be effective in reducing asthma symptoms May even reduce risk of developing asthma in children Foods with omega-3 fatty acids oily fish (salmon, tuna, orange roghy, mullet, and rainbow trout), flaxseed, soybean oil, canola oil, and dark green, leafy vegetables, or supplements Supplemental Nutrients

Caused by Food Allergens?: 

Caused by Food Allergens? Food allergies - usually NOT common trigger Occurs in <5% of asthmatics Difficult to diagnose Skin tests, Blood test (RAST) Food diary, elimination diet Symptoms hives, itching, eczema, sneezing, coughing, swelling of throat, nasal stuffiness, vomiting, diarrhea, cramping, collapse and sometimes death

Activity: 

Activity Physical Activity Quantify vigorous activity or sedentary behavior (goal is to increase energy expenditure) Avg time in front of TV 4.5 hrs/day Half of the American food budget is spent on food eaten outside of the home

Asthma & Exercise: 

Asthma & Exercise Aerobic activity 3 times per week Avoid asthma triggers May lessen Exercise Induced Asthma (EIB) Tips Check local pollen, mold, spore levels. Lengthen the time between breaks while conditioning occurs. Wear scarves over mouth and nose in winter to keep heat & moisture in lungs. Warm-up to lessen chances of EIB. Do pursed lip breathing when medication is not readily available.

Childhood Malnutrition: 

Childhood Malnutrition

Cystic Fibrosis: 

Cystic Fibrosis CFTR Cystic Fibrosis Transmembrane Conductance Regulator Normal function Transport chloride thru membrane of cells

Normal CFTR: 

Normal CFTR When the Cl leaves the cell, an imbalance is created which draws water out of the cell through osmosis. Water keeps mucus moist, prevents infection.

Abnormal CFTR: 

Abnormal CFTR Cl cannot leave cell Water movement diminishes Mucus thickens

Primary Problem = “Clogging”: 

Primary Problem = “Clogging”

In the Lungs: 

In the Lungs Cilia cannot beat properly Bacteria collect Chronic infection occurs Chronic inflammation damages airway Bronchiectasis, respiratory failure results and often leads to death

The GI Tract in CF: 

The GI Tract in CF Pancreas Pancreatic duct blocked Digestive enzymes not adequately secreted “Pancreatic insufficiency” Malabsorption Chronic losses result in malnutrition

The GI Tract in CF: 

The GI Tract in CF Cystic Fibrosis Related Diabetes (CFRD) Leading comorbidity associated with CF Prevalence increases with age 3-12% are reported to have diabetes 14% of CF patients >14 years old 25% of CF patients 35-44 years old Average age of onset 18-21 y/o Females > Males

Survival: 

Survival Finnkelstein et al. . J Pediatr 1988; 112: 373-7 Analysis of survival at U of Minnesota demonstrated that the rapid decline in survival can be attributed to females with CFRD since males with CFRD has ~equivalent suvival rates to males without CFRD

The GI Tract in CF: 

The GI Tract in CF Intestines Meconium Ileus Sticky bits of mucus/intestinal cells preventing baby from having first BM within first 2 days after birth Distal Intestinal Obstruction Syndrome (DIOS) Non-infant version of meconium ileus Causes: dehydration, diet, hx mec ileus, too few or too many enzymes Fibrosing Colonopathy Rectal Prolapse

The GI Tract in CF: 

The GI Tract in CF Stomach Increased Acidity Esophagus GERD, Esophagitis Aspiration Liver Fatty Liver Blocked Bile Duct Gallbladder

CF Patients Are Underweight: 

CF Patients Are Underweight 0 2 4 6 8 10 12 14 16 18 20 0 10 20 30 40 50 Age (years) Weight percentile (%) Cystic Fibrosis Foundation. Patient Registry Annual Report. 2002. Males Females Total US

Low Weight-for-Age Correlates with Poor Lung Function: 

Low Weight-for-Age Correlates with Poor Lung Function Konstan MW, et al. J Pediatr. 2003.

New Data from PortCF: 

New Data from PortCF Makes an association between FEV1 and BMI - Children: >200,000 data points - Adults: >60,000 data points

Males - FEV1 Percent Predicted vs BMI %ile: 

Males - FEV1 Percent Predicted vs BMI %ile

Females - FEV1 Percent Predicted vs BMI Percentiles: 

Females - FEV1 Percent Predicted vs BMI Percentiles

The CF Diet: 

The CF Diet Basic Diet Prescription 1. High calorie (moderate fat), high protein 2. Snacks 2-3 times/day 3. Salt repletion, especially with sweating 4. Fat soluble vitamins in water miscible form Supplementation Calorically dense Oral or enteral

Enteral Feeding Routes: 

Enteral Feeding Routes “Naso” -

Enteral Feeding Routes: 

Enteral Feeding Routes - “ostomy”

Pancreatic Enzyme Replacement Therapy (PERT): 

Pancreatic Enzyme Replacement Therapy (PERT) Purpose To correct steatorrhea, relieve abdominal pain To enhance absorption of fats and proteins Enzymes Mixtures of lipase, protease, and amylase Take with every meal and snack

The CFRD Diet: 

The CFRD Diet Maintain optimal nutritional status and growth Continue high energy intake, no calorie restriction Treatment: CFRD w/o fasting hyperglycemia = Diet only CFRD w/fasting hyperglycemia = Insulin/CHO ctg Control glucose to avoid acute/chronic complications FPG 80-120 mg/dl HgA1c < 7%

The Vitamins and Minerals: 

The Vitamins and Minerals ADEK Age 0-12 mos: 1 ml/d Age 1-3: 2 ml/d Age 4-10: 1 Tab/d Age 10+: 2 Tab/d Salt Infants: 1/8 tsp/day All others: liberal access to salty foods

Stomach Management: 

Stomach Management Treatment options H2 (histamine) blockers -- cimetidine (tagamet), ranitidine (zantac), famotidine (pepcid) Proton Pump Inhibitors (PPI) -- omeprazole (prolosec), lansoprazole (prevacid), pantoprazole (protonix, esomeprazole (Nexium) Erythromycin Nissen fundoplication

Adjuvant Therapies: 

Adjuvant Therapies Appetite stimulants Cyproheptadine --> Bowel regimen Probiotics Taurine (30 mg/kg/d) Miralax (17 g/d)

Accelerating Improvement in CF Care: 

Accelerating Improvement in CF Care “We believe that during the next five years, the life expectancy of CF can be extended by 5-10 years through the consistent application of existing evidence-based clinical care.” Cystic Fibrosis Foundation, 2003

Family Centered Approach: 

Family Centered Approach

Position Statement: 

Position Statement Nutrition services are an essential component of comprehensive care for CSHCN. These nutrition services should be provided within a system of coordinated interdisciplinary services in a manner that is preventive, family centered, community based and culturally competent. American Dietetic Association Position Statement

Family-Centered Care (FCC): 

Family-Centered Care (FCC) Definition Family-centered care assures the health and well-being of children and their families through a respectful family- professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. Family Centered Care is the standard of practice which results in high quality services.” http://www.familycenteredcare.org

Principles of FCC: 

Principles of FCC Foundation = Partnership between families and professionals entities work together in the best interest of child; as child grows, s/he assumes partnership role participants make decisions together information sharing are open and objective there is a willness to negotiate

Case Study: 

Case Study Harold is a 2-year old who requires a g-tube to meet his nutrient needs Was tolerating the standard pediatric formula Family informed team that they were making blenderized formula (formula, whole milk, vegetables, egg) to provide “real food.” RD told family: Harold’s nutrient needs are being met by his formula, and he doesn’t need the extra food. You should just use the prescribed formula.

What went right?: 

What went right? Harold’s family was connected to appropriate health care services Harold’s family communicated with service providers Harold’s family cared about his nourishment

What went wrong?: 

What went wrong? Disconnected communication between professional and parent No acknowledgement of information shared parents about their child’s care Unsupportive responses by professional Told family what to do instead of developing a plan together

What really happened...: 

What really happened... RD realizes need for collaboration, and explains concerns about the homemade formula: raw egg is unsafe nutrient composition may not meet needs can have problems with contamination can have problems with tube clogging because of viscosity of formula

The family’s response...: 

Harold’s parents would like to use the home prepared formula, if possible. RD works with family to make it possible: Raw egg is unsafe; they agree to stop using it Recipe is adjusted to meet Harold’s nutrient needs Family will watch for clogging problems and communicate them to RD The family’s response...

Further thoughts…: 

Further thoughts… Think of a time when you practiced family-centered care Think of an example of care you’ve received that was not family-centered…what could the clinician have done differently? How can you improve your practice?

Slide92: 

Thank You