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Care of the Complex Child

S. U. S. Care of the Complex Child. by Emily Davidson Laurie Glader Thomas Silva reviewed by Ronald Samuels Wanessa Risko Ellen Elias. Who are the children?. Children with: Physical conditions Sensory deficits Cognitive concerns Emotional disorders. How many children?.

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Care of the Complex Child

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  1. S U S Care of the Complex Child by Emily Davidson Laurie Glader Thomas Silva reviewed by Ronald Samuels Wanessa Risko Ellen Elias

  2. Who are the children? Children with: • Physical conditions • Sensory deficits • Cognitive concerns • Emotional disorders

  3. 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

  4. Family issues • Lack of services • Multiple providers • Multiple agencies • Complex coordination nightmares • Fatigue/stress • Lack of privacy

  5. What are common special health care needs? • CP • MR • Spina Bifida • Down Syndrome • Technologically Dependant

  6. Cerebral palsy defined Cerebral palsy is a disorder of movement and tone due to a non-progressive insult which occurred in the immature brain.

  7. 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

  8. Clinical subtypes • Spastic cerebral palsy • diplegic • hemiplegic • quadriplegic • Dyskinetic cerebral palsy • Ataxic cerebral palsy

  9. 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

  10. Hemiplegia • 20% of all CP • 90% secondary to vascular issues • vaso-occlusive stroke (term) • periventricular venous infarction (pre-term) • 10% secondary to malformations

  11. 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)

  12. 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

  13. Ataxic cerebral palsy • 15% of all CP • Usually syndromic • Dandy-Walker • X-linked congenital ataxia • Vermal dysplasia • Initially hypotonic

  14. Treatment goals • Prevention • Limiting disability and improving function • Managing associated medical issues • Managing complications

  15. Orthopedic issues • Manifestations: spasticity, dystonia, weakness and osteopenia • Complications • contractures • hip subluxation • scoliosis • fractures • pain • impaired hygiene

  16. 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

  17. Treatments for spasticity • Physical therapy • Medical agents • Neuromuscular injections • Therapeutic electrical stimulation • Orthopedic or neurosurgical procedures

  18. Spasticity treatment:medical options • Benzodiazepines • Baclofen • enteral versus pump • Dantrolene

  19. 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

  20. Spasticity treatment:orthopedic and neurosurgery • Tenotomies • Osteotomies • Selective dorsal rhizotomy • Baclofen pump

  21. 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.

  22. 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!

  23. Mental retardation: definition • Cognitive functioning significantly below average • Onset within the developmental period • Deficits in adaptive behavior

  24. Subclassification based oncognitive deficit • Mild retardation: 70-50 • Moderate retardation: 50-35 • Severe retardation: 35-20 • Profound retardation: <20

  25. 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

  26. The work-up • Hx/PEX • MRI for moderate to profound range retardation • Chromosomal analysis • Hearing/vision assessments • Developmental assessment

  27. Additional work-up • EEG • Metabolic evaluation • Titers for infectious etiology • TFT’s • Consultation with subspecialists • neurology, genetics, metabolism

  28. Treatment • Highly individualized • Follow/treat associated medical conditions • Emphasis on therapeutic and educational services

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