Children with Severe Profound Challenges Margo Prim Haynes

Overview Clinical Diagnostic Categories NDTA Enablement Model: Functional Integrity/ Impairments, Ineffective and Effective Posture

Dimensions NDT Enablement Classification Model of Health and Disability + Domains Dimension Functional Domain

Clinical Diagnostic Criteria Medical Diagnosis: IQ ranges: – Severe : 40 – 25 –

Disability Domains (Categories) Severe / Profound Motor Problems & Mild / Typical Cognitive Difficulties

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

Body Structure & Body Function Global Damage – Unknown prenatal condition – Asphyxia –

Cognition Challenges Cries: may be only means of communication Motivation: (Self- /Regulation) ? ?

Neuromuscular System Impaired Muscle Activation Co-activation from excessive to moderate Impaired muscle synergies: Stereotyped

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

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

Musculoskeletal System High Risk for… Contractures Hip subluxations /dislocations Shoulder dislocations Scoliosis / excessive

Cardiopulmonary / Respiratory System Cardiovascular Disease (Decoufle) Cardiorespiratory endurance

Other Systems Gastrointestional (GI) System Integumentary System

Posture and Movement General Characteristics: Posture Postural tone = varies from high to medium

Posture and Movement General Movement Characteristics Movement options limited Which comes first: lack of

Feeding Challenges Feeding Difficulty – P & M: – Impairment Nutrition – P &

Activities & Activities Limitation Locomotor Skills Non Ambulatory Communicates Limited Communication usually Non Verbal

Participation & Participation Limitations Participation: Equipment supports children out in community with caregivers Participation

Treatment Think Function Equipment Critical for Child and Family – Seating Systems – Standers

Treatment: Pros Positively Influences Quality of Life: – Hygiene and Ease of Care by

Treatment: Pros Decreases medical complications: – Illness – Contractures – Pressure areas

Treatment Concerns Therapist perspective: Behavior: Cries, Motivation: Progress Slow: Feedback: Difficult to Read Frequent

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

Bibliography Caulton JM. A randomised controlled trial of standing programme on bone mineral density

Bibliography Gudjonsdottir B, Mercer VS. Effects of a dynamic versus a static prone stander

Bibliography Krakovsky et al. Functional changes in children, adolescents, and young adults with cerebral

Bibliography Schwartz, Lauren; Engel, Joyce M. and Mark P. Jensen MP. Pain in persons

Children with Severe / Profound Challenges Adapted from Margo Prim Haynes, PT, DPT, MA,

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

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

Video / Pictures

Dimensions NDT Enablement Classification Model of Health and Disability + Domains Dimension Functional Domain Disability Domain A. Body structure & functions Structural & functional integrity Impairments A. Primary B. Secondary B. Motor functions Effective posture & movement Ineffective posture & movement C. Individual functions Functional activities Functional activity limitations D. Social functions Participation restriction From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2. 1 pg. 82

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

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

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

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

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

Videos

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

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

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

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

Cardiopulmonary / Respiratory System Cardiovascular Disease (Decoufle) Cardiorespiratory endurance

Other Systems Gastrointestional (GI) System Integumentary System

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

Pictures

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

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

Activities & Activities Limitation Locomotor Skills Non Ambulatory Communicates Limited Communication usually Non Verbal Basic ADL’s Totally dependent on caregivers for all ADLs

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

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

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

Treatment: Pros Decreases medical complications: – Illness – Contractures – Pressure areas

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

Treatment Videos

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

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

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: e 5. Hadden, KL. Pain in children with cerebral palsy: common triggers and expressive behaviors. Pain. 2002 Sep; 99(1 -2): 281 -8.

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.

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.

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