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: Possible nutritional insult with 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.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.)
85-95th %ile = At risk
>95th%ile = Overweight
Trends in Overweight* for Children
1963-70
20
1971-74
1976-80
1988-94
1999-2002
Percent
15
10
5
0
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
Obesity Trends* Among U.S. Adults
BRFSS, 1990, 1995, 2005
(*BMI 30, or about 30 lbs overweight for 5’4” person)
1995
1990
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
Milk -39%
Soda
431
54%
261 258
grams
Fruit juice
109
Fruit drinks
69%
1977-78
Carbonated soda
% decrease
137%
0%
% increase
SOURCE: L. Cleveland USDA; NFCS 1977-78 and WWEIA, NHANES 2001-02, 1 day
2001-02
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
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 asthmarelated 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
Weight percentile (%)
50
40
30
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.
Low Weight-for-Age Correlates
with Poor Lung Function
110
Percent of predicted (%)
FVC
FEV1
FEF25-75
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
FEV1 and BMI
- Children: >200,000 data points
- Adults: >60,000 data points
FEV1 % predicted
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
FEV1 % predicted
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.
2.
3.
4.

High calorie (moderate fat), high protein
Snacks 2-3 times/day
Salt repletion, especially with sweating
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
– Age
– Age
– Age

0-12 mos: 1 ml/d
1-3: 2 ml/d
4-10: 1 Tab/d
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 familycentered 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