cerebral palsy: what every early intervention provider should know joshua j. alexander, md director...

Cerebral Palsy:What Every Early

Intervention ProviderShould KnowJoshua 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

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

AgeAge

Birth Preschool Grade School Middle School High School College/ Adulthood

TypeType

Distribution

Monoplegia Hemiplegia Diplegia Quadriplegia

Functional LevelFunctional 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 LevelFunctional 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

Challenges

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 18 times longer than 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 equipmentincreased skin pressurestransfer difficulties

- stress on the heartStress on the bones and ligaments

Drooling

Dysarthria

Dentitia

MusculoskeletalHip Dislocation

Scoliosis

Pelvic Obliquity

Contractures

Fractures

SpasticityA 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?

Identify Challenges

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

Resources

The Real ExpertsThe Real Experts

Questions?