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Cerebral Palsy: What Every Early Intervention Provider Should Know. Joshua J. Alexander, MD Director of Pediatric Rehabilitation UNC School of Medicine. Objectives. Understand the definition of cerebral palsy Be able to identify common types and distributions of cerebral palsy
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Cerebral Palsy:What Every Early Intervention ProviderShould Know Joshua J. Alexander, MD Director of Pediatric Rehabilitation UNC School of Medicine
Objectives • Understand the definition of cerebral palsy • Be able to identify common types and distributions of cerebral palsy • Understand functional classification system ratings for children with cerebral palsy • Know common secondary conditions associated with CP • Be able to develop an approach to care of the child and their family • Be familiar with resources for children with CP and their families
Overview • Our Children • Expectations and Goals • Challenges to Overcome • Your Responsibilities • Resources • Questions
Our Children Brain-Related Lack of Muscle Control CEREBRAL PALSY “ A persistent though not unchanging disorder of movement and posture,appearing early in life and due to a non-progressive lesion of the developing brain” - Little
Our Children “A disorder of movement and posture due to a defect or lesion of the immature brain” - Bax
Our Children “A static, non-progressive (though not unchanging) condition characterized by abnormalities in movement, posture,balance, and /or tone (and lots of other things, too)” - Alexander
Our Children are Unique • Age • Type • Distribution • Associated Challenges • Personal Strengths • Family • Environment
Age • Birth • Preschool • Grade School • Middle School • High School • College/ Adulthood
Distribution • Monoplegia • Hemiplegia • Diplegia • Quadriplegia
Functional Level Gross Motor Functional Classification System GMFCS - E&R (2007) • Level 1 – Walks without limitations • Level 2 – Walks with limitations • Level 3 – Walks using hand-held mobility device • Level 4 – Self-Mobility with limitations/ May use Powered Mobility • Level 5 – Transported in a Manual Wheelchair
Functional Level • Manual Ability Classification System (MACS) – (2005)
Our Children GOALS: • stay healthy and happy • maximize communication and mobility • achieve independence in self-care activities • pursue higher education • satisfying personal and professional life • Take care of us in our old age
Seizures Hemiplegia = 67% Quadriplegia = 56% Diplegia = 31 % Dyskinesia = 27% (increased in presence of mental retardation) Overall, risk is ~ 33%
Seizures • 14 % will become seizure free for 2+ years on AEDs • If seizure-free for 2+ years, try stopping AEDs • 40% will have relapses/ 60% won’t Delgado, et al. Pediatrics 97(2) February, 1996
Cognitive/Behavioral Challenges • mental retardation • learning disability • ADD • ADHD • “Acting out” • Memory difficulties
Hearing Loss • Prevalence = <10% • Most common type = sensori-neural
Feeding Challenges • BPD----SOB---Decreased endurance • High arched palate • Oral Motor Dysfunction • Hypersensitivity • GER--- food avoidance • Parent-Infant Bonding
Feeding Challenges Children with cerebral palsy can take up to 18times longerthan non-disabled children to eat a mouthful of food. (especially those without speech) Gisell & Patrick. Lancet, 1985
Obesity • Decreased caloric expenditure • Food = love • Food = quiet • g-tube feeds bypass satiety cues
Obesity • Problems: • outgrow equipment • increased skin pressures • transfer difficulties - stress on the heart • Stress on the bones and ligaments
Musculoskeletal Hip Dislocation Scoliosis Pelvic Obliquity Contractures Fractures
Spasticity A velocity-dependent increase in muscle tone (and another lecture)
Sensory Disorders two-point discrimination stereognosis
Incontinence • cognitive impairment • decreased communication skills • decreased mobility • neurogenic bladder
Your Responsibilities • Help Make the Diagnosis • Identify Challenges • Prevent the Preventable • Determine and Encourage Child’s Abilities • Refer & Coordinate Services/Supports • Educate & Advocate
Diagnosis CAUTION ! Not all “CP” is really Cerebral Palsy
Make the Diagnosis • Why it’s important: • Prediction for the future is different • siblings/relatives may be at risk • therapies for some disorders
Make the Diagnosis RED FLAGS • Is there a similar illness in other family members? • Is there a progression of symptoms? • Has the child lost abilities?
Prevent the Preventable • Immunizations • Dental care • Injury prevention • Abuse prevention • Divorce prevention • Sibling issues
Referrals • MDs - Neurology,Ortho, NS, Genetics, GI • Therapists - OT, PT, ST, other(?), RD’s • Nursing- Home and Preschool • Financial Resources (SSI, Medicaid, CAP, CSHS, Healthchoice) • Child Service Coordinators • Family Support Groups
Coordination • Medical services • Therapy services • Home Health services • Letters of Necessity • School Services • Managed Care • Transportation