sus care of the complex child by emily davidson laurie glader thomas silva reviewed by ronald...
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SUS
Care of the Complex Childby
Emily DavidsonLaurie GladerThomas Silva
reviewed byRonald SamuelsWanessa Risko
Ellen Elias
SUS
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SUS
Who are the children?
Children with:• Physical conditions• Sensory deficits• Cognitive concerns• Emotional disorders
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SUS
How many children?
• 31% of children have one or more chronic physical condition at some point
• 20% have developmental delays, learning difficulties, and/or emotional or behavioral problems
• 6% have a severe chronic condition• 0.2% are assisted by technology
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SUS
Family issues
• Lack of services• Multiple providers• Multiple agencies• Complex coordination nightmares• Fatigue/stress• Lack of privacy
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SUS
What are common special health care needs?
• CP• MR• Spina Bifida• Down Syndrome• Technologically Dependant
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SUS
Cerebral palsy defined
Cerebral palsy is a disorder of movement and tone due to a non-progressive insult which occurred in the immature brain.
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SUS
Vital Statistics
• 2-3/1,000 live births• Prevalence: 100,000 patients
less than 18 years old in the US• Cost: $5 billion annually• Survival: 87% reach age 30
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SUS
Clinical subtypes
• Spastic cerebral palsy– diplegic– hemiplegic– quadriplegic
• Dyskinetic cerebral palsy• Ataxic cerebral palsy
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SUS
Spastic diplegia• 40% of all CP• 80% of ex-premature infants with CP• 10% of infants <1500g• Rare in term infants• Periventricular hemorrhagic infarction
and periventricular leukomalacia • Course evolves: early hypotonia
followed by fluctuations in tone and finally spasticity
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SUS
Hemiplegia
• 20% of all CP• 90% secondary to vascular issues– vaso-occlusive stroke (term)– periventricular venous infarction (pre-term)
• 10% secondary to malformations
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SUS
Spastic quadriplegia
• 5% of all CP• Most severe form with worst
prognosis• 50% occurs in low birthweight
infants• 45% cerebral dysgenesis• 5% destructive lesions (cystic
encephalomalacia)
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SUS
Dyskinetic cerebral palsy• 15-20% of all CP• Etiology secondary to hypoxic
ischemic encephalopathy, historically hyperbilirubinemia
• Initially hypotonic; delayed onset of choreoathetosis or dyskinesia
• Prognosis better for cognition, risk of seizures; oromotor issues significant
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SUS
Ataxic cerebral palsy
• 15% of all CP• Usually syndromic– Dandy-Walker– X-linked congenital ataxia– Vermal dysplasia
• Initially hypotonic
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SUS
Treatment goals
• Prevention• Limiting disability and
improving function• Managing associated medical
issues• Managing complications
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SUS
Orthopedic issues
• Manifestations: spasticity, dystonia, weakness and osteopenia
• Complications– contractures– hip subluxation– scoliosis– fractures– pain– impaired hygiene
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SUS
Physiologic effects
• Orthopedic - 25% non-ambulatory• Cognitive deficits - 30% mentally
retarded• Seizure disorders -30%• Visual impairment - 25-60%• Auditory impairment - 8-22%• Growth failure and GI disorders• Chronic lung disease• Oromotor impairment
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SUS
Treatments for spasticity
• Physical therapy• Medical agents• Neuromuscular injections• Therapeutic electrical
stimulation• Orthopedic or neurosurgical
procedures
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SUS
Spasticity treatment:medical options
• Benzodiazepines• Baclofen– enteral versus pump
• Dantrolene
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SUS
Treatments for spasticity:neuromuscular injections
• Botulinum A Toxin – inhibits acetylcholine release at the NMJ– onset < 1 wk; duration up to 6 mos
• Phenol neurolysis– causes demyelination– lasts 3-18 months– useful on larger muscle groups– side effects include muscle necrosis, pain
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SUS
Spasticity treatment:orthopedic and neurosurgery
• Tenotomies• Osteotomies• Selective dorsal rhizotomy• Baclofen pump
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SUS
Cerebral palsy: the work-up
ALWAYS LOOK FOR AN EXPLANATION
• MRI• ABR/hearing assessment• Ophthalmologic evaluation• As indicated: EEG, chromosomes, metabolic
evaluation, TORCH titers, etc.
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SUS
Useful goals• Closely monitor physical health– Use subspecialists– At absolute minimum a physical therapist
and orthopedist will be involved
• Promote independence into adulthood
• Assist family with community resources
• Coordinate care!
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SUS
Mental retardation: definition
• Cognitive functioning significantly below average • Onset within the developmental
period• Deficits in adaptive behavior
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SUS
Subclassification based oncognitive deficit
• Mild retardation: 70-50• Moderate retardation: 50-35• Severe retardation: 35-20• Profound retardation: <20
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SUS
Commonly identified etiologies of retardation
• Prenatal factors– chromosomal abnormalities, toxin
exposure , infection (toxo, CMV, rubella, syphilis)
• Perinatal conditions– infection (HSV, GBS), asphyxia, LBW
• Postnatal causes– infectious meningitis (H. flu, strep,
Neisseria), injury, toxin exposure
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SUS
The work-up
• Hx/PEX• MRI for moderate to profound
range retardation• Chromosomal analysis• Hearing/vision assessments• Developmental assessment
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SUS
Additional work-up
• EEG• Metabolic evaluation• Titers for infectious etiology• TFT’s• Consultation with subspecialists– neurology, genetics, metabolism
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SUS
Treatment
• Highly individualized• Follow/treat associated medical
conditions• Emphasis on therapeutic and
educational services