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

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?

    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

   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

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

  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

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

Assessing Nutrition Status

Nutritional Status

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

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

 Head Circumference – Last indicator to be affected by undernutrition – < 3 yr old: – > 3 yr old: Possible nutritional insult with downtrends, accompanied by decreases in weight and height Decreases are generally not nutrition-related

FOR MORE INFO...

See CDC web site to download charts (http://www.cdc.gov/growthcharts)

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

 Fat Stores – Eye fat pad – Cheek pad – Tricep pinch

REFERENCE:

Detsky, A, et al. JPEN. 11:8, Jan/Feb, 1987.

SGA

 Muscle Stores – Temple – Clavicle – Shoulder – Scapula – Upper joint area – Interosseus area

Nutrition Histories

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

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

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.) 85-95 th %ile = At risk >95 th %ile = Overweight

Trends in Overweight* for Children

20 1963-70 Percent 1971-74 1976-80 1988-94 1999-2002 15 10 5 0 Boys 6-11 y Girls 6-11 y Boys 12-19 y Girls 12-19 y

*BMI ≥ 95 th 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

Obesity Trends* Among U.S. Adults BRFSS, 1990, 1995, 2005 (*BMI



30, or about 30 lbs overweight for 5’4” person) 1990 1995 2005 No Data <10% 10%–14% 15%–19% 20%–24% 25%–29% ≥30%

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. Adults BRFSS, 1986

(*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

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. Adults BRFSS, 1988

(*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

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. Adults BRFSS, 1990

(*BMI ≥30, or ~ 30 lbs overweight for 5’ 4” person) No Data <10% 10%–14%

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Adults BRFSS, 2001

(*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

(*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, 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. 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. 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...

Why the increase?

% Change in Mean Intake of Beverages, Children 6-11 Years Old Milk Soda Milk -39% 431 Fruit juice Fruit drinks Carbonated soda

% decrease

0% 54% 109 69% 137% 1977-78

% increase

261 258 2001-02

SOURCE: L. Cleveland USDA; NFCS 1977-78 and WWEIA, NHANES 2001-02, 1 day

Why the increase?

% Change in Mean Intake Foods, Children 6-11 Years Old 320% Savory grain snacks Candy Grain mixed dishes Pizza Vegetable -43% Fried potato 18% 180% 144% 425%

SOURCE: L. Cleveland USDA; NFCS 1977-78 and WWEIA, NHANES 2001-02, 1 day

National Trends

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

Asthma and Obesity

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

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

 Diet Management  Physical Activity  Behavior Modification

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

  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

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

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

   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

Cystic Fibrosis

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

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

   Cl cannot leave cell Water movement diminishes Mucus thickens

Primary Problem = “Clogging”

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

 Pancreas – Pancreatic duct blocked – Digestive enzymes not adequately secreted – “Pancreatic insufficiency” – Malabsorption – Chronic losses result in malnutrition

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

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 Finnkelstein et al. . J Pediatr 1988; 112: 373-7

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

    Stomach – Increased Acidity Esophagus – GERD, Esophagitis – Aspiration Liver – Fatty Liver – Blocked Bile Duct Gallbladder

CF Patients Are Underweight

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

Low Weight-for-Age Correlates with Poor Lung Function

110 FVC FEV 1 FEF 25-75 100 90 80 >75 50 to 74 25 to 49 10 to 24 5 to 9 <5 Weight-for-age percentile group Konstan MW, et al. J Pediatr. 2003.

New Data from PortCF

 Makes an association between FEV 1 and BMI - Children: >200,000 data points - Adults: >60,000 data points

Males - FEV1 Percent Predicted vs BMI %ile

100 95 90 85 80 75 70 65 60 55 50 45 40 <5 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95+ BMI Percentile : Age 6 to 9 10 to 12 13 to 17 18 to 20

Females - FEV1 Percent Predicted vs BMI Percentiles

100 95 90 85 80 75 70 65 60 55 50 45 40 <5 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95+ BMI Percentile : Age 6 to 9 10 to 12 13 to 17 18 to 20

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

 “Naso” -

Enteral Feeding Routes

 - “ostomy”

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

   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

 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

 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

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

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

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)

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

 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

   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?

   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?

    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...

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

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?

Thank You