Nutrition for Children with Special Health Care Needs

Nutr 530

Betty Lucas, MPH, RD, CD

685-1289

blucas@u.washington.edu

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:

• Birth defects

• Result of trauma

• Cancer

• Perinatal drug exposure

• Infection sequelae, e.g. CMID, meningitis

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:

• 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

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.

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 - 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

Prevalence

• 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

• 21% with mild condition

• 9% with moderate condition

• 2% with severe condition

• 68% well children

1993 census data, Newacheck

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; 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?

• 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 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

• Variations:– need to determine if normal or unusual pattern

of growth

• Primary prenatal onset

• Secondary prenatal onset

• Postnatal onset

Primary Prenatal Onset

• Genetic:– inborn errors of metabolism– Laurence-Moon-Biedel syndrome

• Chromosomal: – Prader-Willi– Trisomies (Down syndrome)– Turner syndrome

Primary Prenatal Onset

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

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

Postnatal Onset

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

• infection/sepsis

• prolonged hypoglycemia or acidosis

• IVH

• kernicterus

• deprivation

Services for CSHCN should be:

• Comprehensive• Coordinated• Culturally-appropriate• Community-based• Family-centered

(a challenge with limited resources and service $$)

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

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