Nutrition Perspectives in Children and Youth with Special Health Care Needs CYSHCN

1
Nutrition Perspectivesin Children and Youth
with Special Health Care Needs (CYSHCN)

• Corine Neumiller, RD
• Pediatric Pulmonary Center
• Tucson, Arizona
• 2006

2
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

3
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

4
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
5
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
6
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.

7
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

8
Nutritional Problems

• Normal Nutrition
• Over Under

• Alterations in growth and activity
• Poor absorption, metabolism, excretion
• Drug/nutrient interactions
• Feeding problems

9
Assessing Nutrition Status
10
Nutritional Status

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

11
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)

12
Growth Development

• Head Circumference
• Last indicator to be affected by undernutrition
• downtrends, accompanied by decreases in weight
  and height
• 3 yr old Decreases are generally not
  nutrition-related

FOR MORE INFO...
See CDC web site to download charts (http//www.cd
c.gov/growthcharts)
13
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

14
SGA

• Fat Stores
• Eye fat pad
• Cheek pad
• Tricep pinch

REFERENCE
Detsky, A, et al. JPEN. 118, Jan/Feb, 1987.
15
SGA

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

16
(No Transcript)
17
Nutrition Histories

• Interview that reveals dietary habits
• Quick tool for assessing ones ability to meet,
  fail, or exceed nutritional needs

18
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?

19
Childhood Obesity
20
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
• 95thile Overweight

21
Trends in Overweight for Children
Percent
Boys 6-11 y
Girls 6-11 y
Boys 12-19 y
Girls 12-19 y
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
22
Obesity Trends Among U.S. AdultsBRFSS, 1990,
1995, 2005
(BMI ?30, or about 30 lbs overweight for 54
person)
1995
1990
2005
No Data 1519 2024 2529
30
23
Obesity Trends Among U.S. AdultsBRFSS, 1985
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data Source WWW.CDC (BRFSS, CDC)
24
Obesity Trends Among U.S. AdultsBRFSS, 1986
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 25
Obesity Trends Among U.S. AdultsBRFSS, 1987
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 26
Obesity Trends Among U.S. AdultsBRFSS, 1988
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 27
Obesity Trends Among U.S. AdultsBRFSS, 1989
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 28
Obesity Trends Among U.S. AdultsBRFSS, 1990
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 29
Obesity Trends Among U.S. AdultsBRFSS, 1991
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
30
Obesity Trends Among U.S. AdultsBRFSS, 1992
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
31
Obesity Trends Among U.S. AdultsBRFSS, 1993
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
32
Obesity Trends Among U.S. AdultsBRFSS, 1994
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
33
Obesity Trends Among U.S. AdultsBRFSS, 1995
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
34
Obesity Trends Among U.S. AdultsBRFSS, 1996
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519
35
Obesity Trends Among U.S. AdultsBRFSS, 1997
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 20
36
Obesity Trends Among U.S. AdultsBRFSS, 1998
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 20
37
Obesity Trends Among U.S. AdultsBRFSS, 1999
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 20
38
Obesity Trends Among U.S. AdultsBRFSS, 2000
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 20
39
Obesity Trends Among U.S. AdultsBRFSS, 2001
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 2024 25
40
Obesity Trends Among U.S. AdultsBRFSS, 2002
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 2024 25
41
Obesity Trends Among U.S. AdultsBRFSS, 2003
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 2024 25
42
Obesity Trends Among U.S. AdultsBRFSS, 2004
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 2024 25
43
Obesity Trends Among U.S. AdultsBRFSS, 2005
(BMI 30, or 30 lbs overweight for 5 4
person)
No Data 1519 2024 2529
30
44
Somethings wrong...
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Why the increase?
Change in Mean Intake of Beverages, Children
6-11 Years Old
Milk
-39
Fruit juice
54
Fruit drinks
69
Carbonated soda
137
increase
decrease
0
SOURCE L. Cleveland USDA NFCS 1977-78 and
WWEIA, NHANES 2001-02, 1 day
46
Why the increase?
Change in Mean Intake Foods, Children 6-11
Years Old
320
Savory grain snacks
Candy
180
Grain mixed dishes
144
Pizza
425
Vegetable
-43
Fried potato
18
SOURCE L. Cleveland USDA NFCS 1977-78 and
WWEIA, NHANES 2001-02, 1 day
47
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

48
Asthma and Obesity

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

49
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)

50
Treatment

• Diet Management
• Physical Activity
• Behavior Modification

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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

52
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

53
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

54
Caused by Food Allergens?

• Food allergies - usually NOT common trigger
• Occurs in
• 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

55
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
56
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.

57
Childhood Malnutrition
58
Cystic Fibrosis

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

59
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.

60
Abnormal CFTR

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

61
Primary Problem Clogging
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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

63
The GI Tract in CF

• Pancreas
• Pancreatic duct blocked
• Digestive enzymes not adequately secreted
• Pancreatic insufficiency
• Malabsorption
• Chronic losses result in malnutrition

64
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

65
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
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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

67
The GI Tract in CF

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

68
CF Patients Are Underweight
50
40
30
Weight percentile ()
20
Males
Females
10
Total US
0
0
2
4
6
8
10
12
14
16
18
20
Age (years)
Cystic Fibrosis Foundation. Patient Registry
Annual Report. 2002.
69
Low Weight-for-Age Correlates with Poor Lung
Function
Konstan MW, et al. J Pediatr. 2003.
70
New Data from PortCF

• Makes an association between FEV1 and BMI
• - Children 200,000 data points
• - Adults 60,000 data points

71
Males - FEV1 Percent Predicted vs BMI ile
72
Females - FEV1 Percent Predicted vs BMI
Percentiles
73
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

74
Enteral Feeding Routes

• Naso -

75
Enteral Feeding Routes

• - ostomy

76
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

77
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

78
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

79
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

80
Adjuvant Therapies

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

81
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

82
Family Centered Approach
83
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

84
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
85
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

86
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 Harolds nutrient needs are being
  met by his formula, and he doesnt need the extra
  food. You should just use the prescribed formula.

87
What went right?

• Harolds family was connected to appropriate
  health care services
• Harolds family communicated with service
  providers
• Harolds family cared about his nourishment

88
What went wrong?

• Disconnected communication between professional
  and parent
• No acknowledgement of information shared parents
  about their childs care
• Unsupportive responses by professional
• Told family what to do instead of developing a
  plan together

89
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

90
The familys response...

• Harolds 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 Harolds nutrient
  needs
• Family will watch for clogging problems and
  communicate them to RD

91
Further thoughts

• Think of a time when you practiced
  family-centered care
• Think of an example of care youve received that
  was not family-centeredwhat could the clinician
  have done differently?
• How can you improve your practice?

92

• Thank
• You