Nutrition for Children with Special Health Care Needs Nutr 530

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Nutrition for Children with Special Health Care
NeedsNutr 530

• Betty Lucas, MPH, RD, CD
• 685-1289
• blucas_at_u.washington.edu

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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.

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CSHCN includes

• Birth defects
• Result of trauma
• Cancer
• Perinatal drug exposure
• Infection sequelae, e.g. CMID, meningitis

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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

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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

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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)

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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

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DD - cont

• Reflects the persons 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 lt9 yrs, even
  without delays in 3 areas, if they are likely to
  meet the criteria later in life

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Prevalence

• 17 of children lt18 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

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CSHCN in WA State

• 21 with mild condition
• 9 with moderate condition
• 2 with severe condition
• 68 well children
• 1993 census data, Newacheck

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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

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Risk Factors Etiologies

• Congenital anomalies disorders of organ systems
  (cardiac, renal)
• Exposure to alcohol, drugs, and related
  substances
• Poor prenatal care
• ?? Unknown etiology

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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

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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

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Altered Growth

• Variations
• need to determine if normal or unusual pattern of
  growth
• Primary prenatal onset
• Secondary prenatal onset
• Postnatal onset

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Primary Prenatal Onset

• Genetic
• inborn errors of metabolism
• Laurence-Moon-Biedel syndrome
• Chromosomal
• Prader-Willi
• Trisomies (Down syndrome)
• Turner syndrome

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Primary Prenatal Onset

• Syndromes of Unknown Etiology
• Cornelia DeLange syndrome
• Williams syndrome
• Noonan syndrome
• Smith Lemli-Opitz syndrome
• Rubinstein-Taybi syndrome

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Secondary Prenatal Onset

• Maternal factors
• smoking, alcohol, drugs (legal and illicit)
• infection (congenital rubella, herpes, syphilis)
• placental insufficiency
• poor maternal nutrition
• uncontrolled maternal disorder such as PKU

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Postnatal Onset

• asphyxia (birth trauma, meconium aspiration,
  etc.)
• infection/sepsis
• prolonged hypoglycemia or acidosis
• IVH
• kernicterus
• deprivation

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Services for CSHCN should be

• Comprehensive
• Coordinated
• Culturally-appropriate
• Community-based
• Family-centered
• (a challenge with limited resources and service
  )

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National Agenda for CSHCN

• 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

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National Agenda for CSHCN

• 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