Reaching Out. Touching Lives. Adding Value!

1. CEREBRAL PALSY 101 Reaching Out. Touching Lives. Adding Value!

2. THE DEVELOPING BRAIN Reaching Out. Touching Lives. Adding Value! • Critical Periods of Brain growth • 1 month – neural tube • 4th month – All the lobes and major divisions complete • 1 year post-natal – 2/3 adult size • 2 years age – 75% adult size • 5 years – 90% adult size • Potential for Neurogenesis [new brain cell formation](peaks in utero) and Synaptogenesis [new connection formation](peaks by 5 years) continues throughout life.

3. DEVELOPMENTAL MILESTONES FOR A NORMAL CHILD Reaching Out. Touching Lives. Adding Value! Primitive reflexes (disappear by 3-4 months) Neck control 3-4 months (earlier in African children) Sitting 5-6 months Rolls 7 months Crawls 7-8 months Stands with support 10 months Walks 12 months Climbs up and down stairs 20 months

4. CEREBRAL PALSY (CP) Reaching Out. Touching Lives. Adding Value! A group of disorders of the development of movement and posture, causing activity limitation that are attributed to non-progressive disturbances that occurred in the developing or infant brain.

5. CEREBRAL PALSY (CP) • This is often accompanied by disturbances of sensation, cognition, communication, perception, behaviour or by a seizure disorder. • It is reported to be the most common cause of motor deficiency in childhood both in developing and developed countries. Reaching Out. Touching Lives. Adding Value!

6. CAUSES Reaching Out. Touching Lives. Adding Value! General Premature babies — particularly those who weigh less than 3.3 pounds (1,510 grams or 1.5kg) — have a higher risk of CP than full-term babies. Falls and birth traumas occuring before, around or shortly after delivery Nigeria and Developing Countries Problems during labour and delivery that lead to difficulty in establishing breathing at birth

7. CAUSES • Excessively high bilirubin/jaundice • Infections (Intrauterine and Perinatal) • Metabolic such as Hypoglycemia or Low blood sugar • Developed Countries • Extreme prematurity • Inborn Errors of Metabolism Reaching Out. Touching Lives. Adding Value!

8. TYPES OF CP • Spastic Cerebral Palsy: This causes stiffness and movement difficulties • Dyskinetic Cerebral Palsy: This can be either Athetoid Cerebral Palsy — leads to involuntary and uncontrolled movements or Ataxic Cerebral Palsy — causes a disturbed sense of balance and depth perception Reaching Out. Touching Lives. Adding Value!

9. TYPES OF CP • Mixed Cerebral Palsy: This is a mixture of different types of cerebral palsy. A common combination is spastic and athetoid Reaching Out. Touching Lives. Adding Value!

10. FURTHER CLASSIFICATIONS OF CP Reaching Out. Touching Lives. Adding Value! Clinical (spastic [too stiff], flaccid [too soft], extra-pyramidal [moving without control or abnormally positioned] and mixed). Anatomical (number body parts [limbs] affected) The Gross Motor Function Classification System (GMFCS), a recently developed system, classifies children with CP by their age specific motor activity.

11. FURTHER CLASSIFICATIONS OF CP • Based on the assessment of severity of CP in children 0-12 years of age based on their functional abilities rather than their limitations. • It describes the functional characteristics in five levels, from I to V, with level I being the mildest. Reaching Out. Touching Lives. Adding Value!

12. ANATOMICAL DEPICTION OF CP Reaching Out. Touching Lives. Adding Value!

13. THE GROSS MOTOR FUNCTION CLASSIFICATION SYSTEM (GMFCS) Reaching Out. Touching Lives. Adding Value!

14. DIAGNOSIS OF CP Reaching Out. Touching Lives. Adding Value! Delayed motor milestones Fisting after 5 months of age Inability to sit with support by 8 months Inability to walk at age 15-18 months Discrepancies between intellectual and motor development Persistent or evolving increase or decrease in muscle tone

15. DIAGNOSIS OF CP • Head lag beyond 6 months of age • Poor trunk control and balance • Opisthotonicposturing and extensor thrusting • Development of Dystonia • Toe walking/scissoring of feet • Abnormal motor or gait patterns Reaching Out. Touching Lives. Adding Value!

16. MANAGEMENT OF CEREBRAL PALSY A MULTI DISCIPLINARY APPROACH Reaching Out. Touching Lives. Adding Value!

17. ISSUES IN MANAGEMENT • The Stigma • The Fears • The Reality Reaching Out. Touching Lives. Adding Value!

18. STIGMA • In African culture, children are highly cherished for many reasons, principal amongst which is the hope that they will bring prosperity in future. Thus when a child is diagnosed as having a condition that diminishes such expectation, hopes are dashed and parents often go through a process that can be associated with grieving. Reaching Out. Touching Lives. Adding Value!

19. STIGMA • Next comes blame: • Is it a curse • Evidence of infidelity or witchcraft • Is it hereditary Reaching Out. Touching Lives. Adding Value!

20. CONSEQUENCES OF STIGMA • Denial of the child • Neglect - A significant number of children are severely malnourished • Social isolation: Many children are hidden away from other family members, friends and the community. Some are shipped of to live with distant relatives who are not in a position to provide proper care • Infanticide: There are numerous recorded cases. Reaching Out. Touching Lives. Adding Value!

21. THE FEARS • Will it happen again? • Who will bare the high cost of care? • What is the duration of care? • What quality of life is the child expect to have? • What label will be placed on the child? i.e. Impaired, Disabled, Handicapped. Reaching Out. Touching Lives. Adding Value!

22. THE REALITY • No quick fixes or magic cures. • Care is multi-disciplinary. • Process of care is long, requiring determination, patience and faith in the in-born (often times undiscovered) abilities of the child. • Most therapies often require prolonged periods before appreciable differences can be seen. • It is difficult to predict response to therapies. Reaching Out. Touching Lives. Adding Value!

23. THE REALITY • Most families go through different stages of grieving before finally accepting the diagnosis • In Nigeria, without social security, the complete cost of care for a child with CP is borne by the parents • In Nigeria and other African countries, most causes of CP can either be prevented or considerably reduced with improved Basic Health Care Services • As stakeholders, we should all be change agents and join in the advocacy for the rights of children living with cerebral palsy and other childhood disabilities Reaching Out. Touching Lives. Adding Value!

24. TREATMENT/MANAGEMENT OF CP • Cerebral palsy can’t be cured, but early application of the right management options for the child often results in a marked improvement in the quality of life of an adult with CP.   • The earlier treatment begins the better chances children with CP will have in overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them.    Reaching Out. Touching Lives. Adding Value!

25. TREATMENT/MANAGEMENT OF CP • CP usually affects several areas of functioning and as a result, there is a requirement for several disciplines to be involved in managing the condition • It is also preferable to have a pediatrician coordinate the activities of the multi-disciplinary care team in order to ensure an effective treatment outcome. Reaching Out. Touching Lives. Adding Value!

26. GENERAL PRINCIPLES OF TREATMENT/MANAGEMENT Reaching Out. Touching Lives. Adding Value! Determine severity of the disorder in order to arrive at an appropriate level of intervention that is required for proper management Establish clear indications and goals for each therapy Ensure that therapists and operators of intervention programs are well informed about the child’s condition and that they also inform the physician of their activities

27. GENERAL PRINCIPLES OF TREATMENT/MANAGEMENT • Details of local intervention programs with details of eligibility, access and payment should be readily available • Include parents in therapy sessions and encouraged them to incorporate what they learn into their child’s daily activities. Reaching Out. Touching Lives. Adding Value!

28. THE MULTI-DISCIPLINARY TEAM • Pediatricians - provide general care and coordinate the activities of other members of the Multi-Disciplinary Care Team • Surgeons –provide specialist care and perform corrective surgeries. • Occupational therapists- help manage fine motor activities • Physiotherapists- help manage gross motor movements Reaching Out. Touching Lives. Adding Value!

29. THE MULTI-DISCIPLINARY TEAM • Speech therapists - help improve speech and swallowing. • Clinical Psychologists - provide emotional well-being as well as cognitive evaluation for school placement. • Special need educators - provide the right kind of education for children with cognitive impairment Reaching Out. Touching Lives. Adding Value!

30. OTHER MANAGEMENT OPTIONS The quality of life of children with CP clients can be greatly enhanced through the use of the following: • Prosthetic devices such as braces and other orthotics • Wheelchairs and rolling walkers • IT devices such as computers, voice synthesizers and other accessories that can aid communication and mobility.   Reaching Out. Touching Lives. Adding Value!

31. WHAT PARENTS SHOULD DO • Get diagnosis from appropriate specialists. • Get informed so as to be in a better position to separate fact from myth • Identify available options for intervention • Get involved with or start a support group. • Get counselling. Reaching Out. Touching Lives. Adding Value!

32. WHAT GOVERNMENT SHOULD DO • Provide facilities and trained manpower for the effective management of CP and other childhood disabilities • Provide support for families in terms of funding and affordable or subsidized medication • Ensure a disable friendly environment through the provision of accessible public transportation and public buildings • Enact laws to reduce stigma, discrimination, abuse, neglect, and violations of rights Reaching Out. Touching Lives. Adding Value!

33. WHAT GOVERNMENT SHOULD DO • Train and deploy of a Medical Aids Corps of adequately trained young adults to run awareness campaigns on childhood disabilities and early detection/intervention techniques in rural communities. • Establish Special Care Units for Childhood Disabilities in hospitals/health centers Reaching Out. Touching Lives. Adding Value!

34. WHAT GOVERNMENT SHOULD DO • Establish Counseling Units in hospitals and health centers to help families of children with CP to cope the realities of their situation. • Organize regular Seminars and Conferences on CP and other childhood disabilities to serve as forums where affected families and interested members of the public can get better informed about CP related issues. Reaching Out. Touching Lives. Adding Value!

35. WHAT GOVERNMENT SHOULD DO • Build capacity for all categories of Healthcare providers in the area of early intervention and modern trends in the management of CP and other childhood disabilities. • Provide special medication and other management options like physiotherapy, for children with CP and other childhood disabilities. Reaching Out. Touching Lives. Adding Value!

36. WHAT GOVERNMENT SHOULD DO • Train and deploy Special Needs Teachers and Careers in schools. • Identify and document affected families in rural communities. • Compile a register of relevant professionals for the management of childhood disabilities in each community. Reaching Out. Touching Lives. Adding Value!

37. CONCLUSION • CP is the most common cause of movement disorders in children. • It is also the most expensive childhood disability to manage. • Some causes of CP can be prevented through the provision of adequate care for pregnant women and young children. Reaching Out. Touching Lives. Adding Value!

38. CONCLUSION • Families play a critical role in the provision of care for children with CP and other childhood disabilities and should be given the necessary financial, social and emotional support to carry out that responsibility • Effort should be made and facilities put in place to help discover the hidden potentials of children with CP and other childhood disabilities Reaching Out. Touching Lives. Adding Value!

39. THE WAY FORWARD • Healthcare Professionals need to listen more and provide adequate as well as appropriate information to families. • Relevant agencies should support Benola’s effort to raise awareness about CP and other childhood disabilities to ensure that discussions continue even at the highest levels. Reaching Out. Touching Lives. Adding Value!

40. THE WAY FORWARD • There is need for families and NGO’s to come together to form larger support and advocacy groups for CP and other childhood disabilities. • There is need for Government at all levels to rise to their responsibilities towards children with childhood disabilities and their families. Reaching Out. Touching Lives. Adding Value!

41. REFERENCES • Parameter: Diagnostic Assessment of the Child with Cerebral Palsy: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society". Neurology 62 (6): 851–63. PMID15037681. • Benola CPI, (2013). Group 3 Syndicate Presentation at Benola’s Two Day Round Table Meeting of Experts, Lagos. • Benola CPI, (2013). Report of Roundtable Meeting of Experts on Effective Management of Cerebral Palsy in Nigeria, Lagos. Cerebral Palsy Children’s Hemiplegia and Stroke Association Report, (2012). Reaching Out. Touching Lives. Adding Value!

42. REFERENCES • Ejeliogu, E. (2013) Management of Cerebral Palsy in Nigeria: Paper delivered at Benola’s Two Day Roundtable Meeting of Experts on CP, Lagos.   • Lesi, F.E.A. (2013). Cerebral Palsy: The Stigma, the fears and the Reality. A paper presented at Benola Cerebral Palsy Initiative Family Forum, Lagos. • National Institute of Neurological Disorders and Stroke (2012). Cerebral Palsy: Hope Through Research. Cerebral palsy information booklet compiled by the National Institute of Neurological Disorders and Stroke (NINDS).   Reaching Out. Touching Lives. Adding Value!

43. REFERENCES • Odding, E. Roebroeck, M.E. Stam, H. J. (2006). The epidemology of cerebral palsy: incidence, impairments and risk factors. • Rosenbaum, P. Paneth, N. Leviton, A. Goldstein, M. Bax, M. (2007a). A Report. The Definition and Classification of Cerebral Palsy April 2006. Developmental Medicine and Child Neurology Journal Supplement, 49:8-14. • Sa’ad, M. T. (2013) Early Detection and Effective Management of Persons Living with Cerebral Palsy in Nigeria: Paper presented at Benola’s 2 Day Roundtable Meeting of Experts on Cerebral Palsy, Lagos. Reaching Out. Touching Lives. Adding Value!

44. REFERENCES Sa’ad, M.T. (2012). Efficacy of Cognitive-Behavioural Therapy on Self-Concept of the Visually Impaired Students of Kaduna State Special Education School. An Unpublished Ph. D Thesis Presented to the Department of Counselling and Educational Psychology, University of Abuja, Nigeria. Umeh, C. S. (2013). Management of Cerebral Palsy: A Multidisciplinary Approach. Paper delivered at Benola’s CP Family Forum, Lagos. Reaching Out. Touching Lives. Adding Value!

45. REFERENCES Websites http:/www.achievebeyondusa.com http://www.cpaustralia.com.au http://cpfamilynetwork.org/ http://www.ehow.com/about_5070671_developmental-disabilities.html#ixzz2jisGvEp9 http://www.katherinebouton.com/ Reaching Out. Touching Lives. Adding Value!