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

2. 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

3. Overview n Our Children n Expectations and Goals n Challenges to Overcome n Your Responsibilities n Resources n Questions

4. Our Children

5. 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

6. Our Children “A disorder of movement and posture due to a defect or lesion of the immature brain” - Bax

7. 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

8. Our Children are Unique n Age n Type n Distribution n Associated Challenges n Personal Strengths n Family n Environment

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

10. Type

11. Distribution n Monoplegia n Hemiplegia n Diplegia n Quadriplegia

12. 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

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

14. 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

15. Challenges

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

17. 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

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

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

20. 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

21. 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

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

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

24. Drooling Dysarthria Dentitia

25. Musculoskeletal Hip Dislocation Scoliosis Pelvic Obliquity Contractures Fractures

26. Spasticity A velocity-dependent increase in muscle tone (and another lecture)

27. Sensory Disorders two-point discrimination stereognosis

28. Incontinence n cognitive impairment n decreased communication skills n decreased mobility n neurogenic bladder

29. 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

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

31. Make the Diagnosis n Why it’s important: Prediction for the future is different siblings/relatives may be at risk therapies for some disorders

32. 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?

33. Identify Challenges

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

35. 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

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

37. Resources

38. The Real Experts

39. Questions?