Cerebral Palsy: What Every Early Intervention Provider Should Know Joshua J. Alexander, MD Director of Pediatric Rehabilitation UNC School of Medicine

Objectives n Understand the definition of cerebral palsy n Be able to identify common types and distributions of cerebral palsy n Understand functional classification system ratings for children with cerebral palsy n Know common secondary conditions associated with CP n Be able to develop an approach to care of the child and their family n Be familiar with resources for children with CP and their families

Overview n Our Children n Expectations and Goals n Challenges to Overcome n Your Responsibilities n Resources n 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 n Age n Type n Distribution n Associated Challenges n Personal Strengths n Family n Environment

Age n Birth n Preschool n Grade School n Middle School n High School n College/ Adulthood

Type

Distribution n Monoplegia n Hemiplegia n Diplegia n Quadriplegia

Functional Level Gross Motor Functional Classification System GMFCS - E&R (2007) n Level 1 – Walks without limitations n Level 2 – Walks with limitations n Level 3 – Walks using hand-held mobility device n Level 4 – Self-Mobility with limitations/ May use Powered Mobility n Level 5 – Transported in a Manual Wheelchair

Functional Level n Manual Ability Classification System (MACS) – (2005)

Our Children GOALS: n stay healthy and happy n maximize communication and mobility n achieve independence in self-care activities n pursue higher education n satisfying personal and professional life n Take care of us in our old age

Challenges

Seizures Hemiplegia= 67% Quadriplegia=56% Diplegia=31 % Dyskinesia=27% (increased in presence of mental retardation) Overall, risk is ~ 33%

Seizures n 14 % will become seizure free for 2+ years on AEDs n If seizure-free for 2+ years, try stopping AEDs n 40% will have relapses/ 60% won’t Delgado, et al. Pediatrics 97(2) February, 1996

Cognitive/Behavioral Challenges n mental retardation n learning disability n ADD n ADHD n “Acting out” n Memory difficulties

Hearing Loss n Prevalence =<10% n Most common type =sensori-neural

Feeding Challenges n BPD----SOB---Decreased endurance n High arched palate n Oral Motor Dysfunction n Hypersensitivity n GER--- food avoidance n Parent-Infant Bonding

Feeding Challenges Children with cerebral palsy can take up to 18 times longer than non-disabled children to eat a mouthful of food. (especially those without speech) Gisell & Patrick. Lancet, 1985

Obesity n Decreased caloric expenditure n Food = love n Food = quiet n g-tube feeds bypass satiety cues

Obesity n Problems: outgrow equipment increased skin pressures transfer difficulties - stress on the heart Stress on the bones and ligaments

Drooling Dysarthria Dentitia

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 n cognitive impairment n decreased communication skills n decreased mobility n neurogenic bladder

Your Responsibilities n Help Make the Diagnosis n Identify Challenges n Prevent the Preventable n Determine and Encourage Child’s Abilities n Refer & Coordinate Services/Supports n Educate & Advocate

Diagnosis CAUTION ! Not all “CP” is really Cerebral Palsy

Make the Diagnosis n 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 n Is there a similar illness in other family members? n Is there a progression of symptoms? n Has the child lost abilities?

Identify Challenges

Prevent the Preventable n Immunizations n Dental care n Injury prevention n Abuse prevention n Divorce prevention n Sibling issues

Referrals n MDs - Neurology,Ortho, NS, Genetics, GI n Therapists - OT, PT, ST, other(?), RD’s n Nursing- Home and Preschool n Financial Resources (SSI, Medicaid, CAP, CSHS, Healthchoice) n Child Service Coordinators n Family Support Groups

Coordination n Medical services n Therapy services n Home Health services n Letters of Necessity n School Services n Managed Care n Transportation

Resources

The Real Experts

Questions?