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Nutrition for Children with Special Health Care Needs Nutr 530. Betty Lucas, MPH, RD, CD 685-1289 [email protected] Who are CSHCN?.

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Nutrition for children with special health care needs nutr 530

Nutrition for Children with Special Health Care NeedsNutr 530

Betty Lucas, MPH, RD, CD


[email protected]

Who are cshcn
Who are CSHCN?

Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required by children generally

McPherson M et al. A new definition of children with special health care needs. Pediatrics, 1998.

Cshcn includes
CSHCN includes:

  • Birth defects

  • Result of trauma

  • Cancer

  • Perinatal drug exposure

  • Infection sequelae, e.g. CMID, meningitis

Who are children at increased risk
Who are Children at Increased Risk?

  • Very low birth weight

  • Metabolic deficiencies

  • Some chromosomal abnormalities

  • Extreme poverty

  • Absence of social support

  • Child abuse or neglect

  • Air pollution, 2nd-hand smoke and infestations that can exacerbate conditions such as asthma

Required health and related services are
Required Health and Related Services” are:

  • Specialized medical & nursing services; enhanced preventive and primary services

  • Therapies such as PT, OT, speech, mental health, home health, nursing services

  • Family support services, e.g. counseling, case management, care coordination, respite care

  • Durable medical equipment and assistive devices

  • Early intervention (birth-3 yrs, special education, transportation, social services

Developmental disability
Developmental Disability

A chronic severe disability of a person 5 yrs and older which:

-is attributable to a mental or physical impairment or combination

- is manifested before age 22 yrs

- is likely to continue indefinitely

(Public Law No. 101-496, Developmental Disabilities Assistance and Bill of Rights Act of 1990)

Dd cont
DD – cont.

Results in substantial functional limitations in 3 or more of these areas of major life activity:

-self care - receptive/expressive language

- learning - mobility

- self-direction - capacity for independent living

- economic sufficiency

Dd cont1
DD - cont

  • Reflects the person’s need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated

  • Includes infants and children <9 yrs, even without delays in 3 areas, if they are likely to meet the criteria later in life


  • 17% of children <18 yrs have some type of developmental disability (CDC, 2001)

  • 79-90% of children under age 3 yrs with developmental delays in early intervention (EI) programs had 1 or more nutrition risk factors (Bayerl et al., 1993)

  • 3-4 million Americans have DD, and another 3 million have milder forms of cognitive disabilities or mental retardation

Cshcn in wa state
CSHCN in WA State

  • 21% with mild condition

  • 9% with moderate condition

  • 2% with severe condition

  • 68% well children

    1993 census data, Newacheck

Risk factors etiologies
Risk Factors; Etiologies

  • Increased survival of premature and low birthweight infants – with subsequent sequelae, i.e. cerebral palsy, MR, developmental delays, learning/school difficulties

  • Genetic disorders

  • Inherited metabolic disorders

  • Chromosomal abnormalities; specific syndromes

Risk factors etiologies1
Risk Factors; Etiologies

  • Congenital anomalies; disorders of organ systems (cardiac, renal)

  • Exposure to alcohol, drugs, and related substances

  • Poor prenatal care

  • ?? Unknown etiology

Why are these children at higher risk for nutrition concerns
Why are these children at higher risk for nutrition concerns?

  • Altered growth – short stature, growth retardation

  • Increased or decreased energy needs due to medical condition, limited mobility

  • Overweight, underweight, FTT

  • Inadequate nutrient intake due to feeding difficulties, anorexia, increased needs

Why are these children at higher risk for nutrition concerns1
Why are these children at higher risk for nutrition concerns?

  • Feeding problems – oral motor, self-feeding, behavioral

  • Medication-nutrient interactions

  • Special diets, e.g. renal, diabetic, PKU

  • Disrupted parent-child feeding interactions

  • Dental issues impacting feeding/diet

  • Use of alternative and complementary therapies

Altered growth
Altered Growth concerns?

  • Variations:

    • need to determine if normal or unusual pattern of growth

  • Primary prenatal onset

  • Secondary prenatal onset

  • Postnatal onset

Primary prenatal onset
Primary Prenatal Onset concerns?

  • Genetic:

    • inborn errors of metabolism

    • Laurence-Moon-Biedel syndrome

  • Chromosomal:

    • Prader-Willi

    • Trisomies (Down syndrome)

    • Turner syndrome

Primary prenatal onset1
Primary Prenatal Onset concerns?

  • Syndromes of Unknown Etiology:

    • Cornelia DeLange syndrome

    • Williams syndrome

    • Noonan syndrome

    • Smith Lemli-Opitz syndrome

    • Rubinstein-Taybi syndrome

Secondary prenatal onset
Secondary Prenatal Onset concerns?

  • Maternal factors:

    • smoking, alcohol, drugs (legal and illicit)

    • infection (congenital rubella, herpes, syphilis)

    • placental insufficiency

    • poor maternal nutrition

    • uncontrolled maternal disorder such as PKU

Postnatal onset
Postnatal Onset concerns?

  • asphyxia (birth trauma, meconium aspiration, etc.)

  • infection/sepsis

  • prolonged hypoglycemia or acidosis

  • IVH

  • kernicterus

  • deprivation

Services for cshcn should be
Services for CSHCN should be: concerns?

  • Comprehensive

  • Coordinated

  • Culturally-appropriate

  • Community-based

  • Family-centered

    (a challenge with limited resources and service $$)

National agenda for cshcn
National Agenda for CSHCN concerns?

  • All children will receive regular ongoing comprehensive care within a “medical home”

  • All families will have adequate private and/or public insurance to pay for needed services

  • All children will be screened early and continuously for special health care needs

National agenda for cshcn1
National Agenda for CSHCN concerns?

  • Services for CSHCN and their families will be organized in ways that families can use them easily

  • Families of CSHCN will participate in decision making at all levels and will be satisfied with the services they receive

  • All youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life including adult health care, work & independence