Children with Severe / Profound Challenges

1. Children with Severe / Profound Challenges Margo Prim Haynes PT, DPT, MA, PCS Mary Rose Franjoine PT, DPT, MS, PCS

2. Overview • Clinical Diagnostic Categories • NDTA Enablement Model: Functional Integrity/ Impairments, Ineffective and Effective Posture and Movement, Activities and Activities Limitation, Participation and Participation limitation • Treatment

3. Video / Pictures

4. + Domains - Dimensions NDT Enablement Classification Model of Health and Disability From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

5. Clinical Diagnostic Criteria • Medical Diagnosis: • IQ ranges: • Severe : 40 – 25 • Profound: Less than 25 • Educational Abilities: • Self Contained Classrooms: Trainable • Motor Abilities:

6. NDT Enablement Classification Model of Health and Disability + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

7. Disability Domains (Categories) • Severe / Profound Motor Problems & Mild / Typical Cognitive Difficulties • Severe / Profound Motor Problems & Severe / Profound Cognitive Limitations • Fair Motor Difficulties & Severe / Profound Cognitive Limitations

8. Children with Severe / Profound Motor and/or Mental Functional Activities / Limitations and Participation / Restrictions

9. NDT Enablement Classification Model of Health and Disability + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82 2009 M R Franjoine & M P Haynes 9

10. Body Structure & Body Function • Global Damage • Unknown prenatal condition • Asphyxia • Prematurity • Intracranial bleeds, infection, medical conditions

11. Cognition Challenges • Cries: may be only means of communication • Motivation: (Self- /Regulation) ??? • Behavior: Self abusive or destructive • Bonding difficulty: poor facial expression & lack of eye contact • Startle Response: Difficulty adjusting to the world around them

12. Videos

13. Neuromuscular System Impaired Muscle Activation • Co-activation from excessive to moderate • Impaired muscle synergies: Stereotyped patterns of movement • Latency in initiating, sustaining and terminating postural muscle activity

14. Neuromuscular System Impairment of Timing and Sequencing: Insufficient Force Generation (muscle strength): Postural and Movement Muscles

15. Sensory System Somatosensory Issues: Proprioception / Tactile Information Vestibular Visual Issues: Auditory Issues:

16. Musculoskeletal System High Risk for… • Contractures • Hip subluxations /dislocations • Shoulder dislocations • Scoliosis / excessive lordosis • Bone Growth Impaired

17. Cardiopulmonary / Respiratory System • Cardiovascular Disease (Decoufle) • Cardiorespiratory endurance

18. Other Systems • Gastrointestional (GI) System • Integumentary System

19. NDT Enablement Classification Model of Health and Disability + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82 2009 M R Franjoine & M P Haynes 19

20. Posture and Movement General Characteristics: Posture • Postural tone = varies from high to medium • Asymmetry = poor midline orientation • Alignment: UE= may remain in high-low guard position • Alignment: LE = may see" windswept” legs

21. Pictures

22. Posture and Movement General Movement Characteristics • Movement options limited • Which comes first: lack of motivation or unsuccessful attempts to move ???

23. Feeding Challenges • Feeding Difficulty • P & M: • Impairment • Nutrition • P & M: Physical Traits of Malnutrition • Impairment: Blood chemistry • Aspiration • P & M: • Impairment: • Pneumonia

24. NDT Enablement Classification Model of Health and Disability + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82 2009 M R Franjoine & M P Haynes 24

25. Activities & Activities Limitation

26. NDT Enablement Classification Model of Health and Disability + Domains - Dimensions From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82 2009 M R Franjoine & M P Haynes 26

27. Participation & Participation Limitations Participation: • Equipment supports children out in community with caregivers Participation Limitations: • Difficult for families to get children out of the home • Problem intensifies as Caregivers Age • Finances

28. Treatment Think • Function • Equipment Critical for Child and Family • Seating Systems • Standers • Essential for Child’s Health and Well Being • Prevention of Secondary Impairments

30. Treatment: Pros • Positively Influences Quality of Life: • Hygiene and Ease of Care by Caregivers • Respiratory function • Cardiac function • Caregiver and Child Bonding / Interactions • Childs Personality • Comfort of Child and Play Options

31. Treatment: Pros • Decreases medical complications: • Illness • Contractures • Pressure areas

32. Treatment Concerns Therapist perspective: • Behavior: Cries, • Motivation: • Progress Slow: • Feedback: Difficult to Read • Frequent Illness: Frequent Missed Appointments • Medical Issues:

33. Treatment Videos

34. Medical Issues • Team Approach Critical • Nutritional Needs • Seizure Medications • Spasticity Management • Surgical Issues • Pain Management

35. Bibliography • Caulton JM. A randomised controlled trial of standing programme on bone mineral density in non-ambulant children with cerebral palsy. Arch Dis Child. 2004;89:131-135. • Decoufle P and Autry A. Increased mortality in children and adolescents with developmental disabilities. Paediatric and Perinatal Epidermiology.2002;16:375-382. • Gajdosik, CG, Cicirello N. Secondary Conditions of the Musculoskeletal System in Adolescents and Adults with Cerebral Palsy. Physical & Occupational Therapy in Pediatrics. 2001;21(4):49-68

36. Bibliography • Gudjonsdottir B, Mercer VS. Effects of a dynamic versus a static prone stander on bone mineral density and behavior in four children with severe cerebral palsy. PEDIATR PHYS THER. 2002;14:38-46. • Henderson RC. Bone density and metabolism in children and adolescents with moderate to severe cerebral palsy. Pediatrics. 2002;110:e5. • Hadden, KL. Pain in children with cerebral palsy: common triggers and expressive behaviors. Pain. 2002 Sep;99(1-2):281-8.

37. Bibliography • Krakovsky et al. Functional changes in children, adolescents, and young adults with cerebral palsy. Res Dev Disabil. Jun 10, 2006; • Persson-Bunke, M. Windswept hip deformity in children with cerebral palsy. J Pediatric Orthopedic, Part B. 2006 Sep;15(5):335-8. • Pin TW. Effectiveness of static weight-bearing exercises in children with cerebral palsy. PEDIATR PHYS THER. 2007;19:62-73.

38. Bibliography • Schwartz, Lauren; Engel, Joyce M. and Mark P. Jensen MP. Pain in persons with cerebral palsy. Archives of Physical Medicine and Rehabilitation. Oct 1999; 80:10 (1243-1246). • Ward K. Low magnitude mechanical loading is osteogenic in children with disabling conditions. Journal of Bone and Mineral Research. 2004;19:360-369.

39. Children with Severe / Profound Challenges Adapted from Margo Prim Haynes, PT, DPT, MA, PCS Pam Cannon PT