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

Children with Severe / Profound Children with Severe / Profound Challenges Challenges

Margo Prim Haynes PT, DPT, MA, PCSMargo Prim Haynes PT, DPT, MA, PCS

Mary Rose Franjoine PT, DPT, MS, PCSMary Rose Franjoine PT, DPT, MS, PCS

OverviewOverview

Clinical Diagnostic CategoriesClinical Diagnostic Categories

NDTA Enablement Model: Functional NDTA Enablement Model: Functional Integrity/ Impairments, Ineffective and Integrity/ Impairments, Ineffective and Effective Posture and Movement, Activities Effective Posture and Movement, Activities and Activities Limitation, Participation and and Activities Limitation, Participation and Participation limitationParticipation limitation

TreatmentTreatment

Video / PicturesVideo / Pictures

NDT Enablement Classification NDT Enablement Classification Model of Health and DisabilityModel of Health and Disability

DimensionDimension Functional DomainFunctional Domain Disability DomainDisability Domain

A. Body structure & A. Body structure & functionsfunctions

Structural & Structural & functional integrityfunctional integrity

ImpairmentsImpairments

A.A.PrimaryPrimary

B.B.SecondarySecondary

B. Motor functionsB. Motor functions Effective posture & Effective posture & movementmovement

Ineffective posture & Ineffective posture & movementmovement

C. Individual C. Individual functionsfunctions

Functional activitiesFunctional activities Functional activity Functional activity limitationslimitations

D. Social functionsD. Social functions ParticipationParticipation Participation Participation restrictionrestriction

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From: NDT Approach Theoretical Foundations & Principles of Clinical Practice, Table 2.1 pg. 82

Clinical Diagnostic CriteriaClinical Diagnostic Criteria

Medical Diagnosis:Medical Diagnosis:

IQ ranges:IQ ranges:

– Severe : 40 – 25Severe : 40 – 25

– Profound: Less than 25 Profound: Less than 25

Educational Abilities:Educational Abilities:

– Self Contained Classrooms: TrainableSelf Contained Classrooms: Trainable

Motor Abilities:Motor Abilities:

NDT Enablement Classification Model of Health and Disability





A.A.PrimaryPrimary







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Disability Domains (Categories)Disability Domains (Categories)

Severe / Profound Motor Problems & Mild / Severe / Profound Motor Problems & Mild / Typical Cognitive Difficulties Typical Cognitive Difficulties

Severe / Profound Motor Problems & Severe / Profound Motor Problems & Severe / Profound Cognitive Limitations Severe / Profound Cognitive Limitations

Fair Motor Difficulties & Severe / Profound Fair Motor Difficulties & Severe / Profound Cognitive LimitationsCognitive Limitations

Children with Severe / Profound Children with Severe / Profound Motor and/or Mental Functional Motor and/or Mental Functional

Activities / Limitations and Activities / Limitations and Participation / RestrictionsParticipation / Restrictions

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A.A.PrimaryPrimary







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Body Structure & Body FunctionBody Structure & Body Function

Global DamageGlobal Damage

– Unknown prenatal conditionUnknown prenatal condition

– AsphyxiaAsphyxia

– PrematurityPrematurityIntracranial bleeds, infection, medical Intracranial bleeds, infection, medical conditionsconditions

Cognition ChallengesCognition Challenges

Cries: may be only means of Cries: may be only means of communicationcommunication

Motivation: (Self- /Regulation) ??? Motivation: (Self- /Regulation) ???

Behavior: Self abusive or destructive Behavior: Self abusive or destructive

Bonding difficulty: poor facial expression & Bonding difficulty: poor facial expression & lack of eye contact lack of eye contact

Startle Response: Difficulty adjusting to Startle Response: Difficulty adjusting to the world around them the world around them

VideosVideos

Neuromuscular SystemNeuromuscular System

Impaired Muscle ActivationImpaired Muscle Activation

Co-activation from excessive to moderateCo-activation from excessive to moderate

Impaired muscle synergies: Stereotyped Impaired muscle synergies: Stereotyped patterns of movementpatterns of movement

Latency in initiating, sustaining and Latency in initiating, sustaining and terminating postural muscle activity terminating postural muscle activity

Neuromuscular SystemNeuromuscular System

Impairment of Timing and Sequencing:Impairment of Timing and Sequencing:

Insufficient Force Generation (muscle Insufficient Force Generation (muscle strength): Postural and Movement strength): Postural and Movement MusclesMuscles

Sensory SystemSensory System

Somatosensory Issues: Proprioception / Somatosensory Issues: Proprioception / Tactile InformationTactile Information

VestibularVestibular

Visual Issues: Visual Issues:

Auditory Issues: Auditory Issues:

Musculoskeletal SystemMusculoskeletal System

High Risk for…High Risk for…

ContracturesContractures

Hip subluxations /dislocationsHip subluxations /dislocations

Shoulder dislocationsShoulder dislocations

Scoliosis / excessive lordosisScoliosis / excessive lordosis

Bone Growth Impaired Bone Growth Impaired

Cardiopulmonary / Respiratory Cardiopulmonary / Respiratory System System

Cardiovascular Disease Cardiovascular Disease (Decoufle)(Decoufle)

Cardiorespiratory enduranceCardiorespiratory endurance

Other Systems Other Systems

Gastrointestional (GI) SystemGastrointestional (GI) System

Integumentary SystemIntegumentary System







A.A.PrimaryPrimary







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Posture and MovementPosture and Movement

General Characteristics: PostureGeneral Characteristics: Posture

Postural tone = varies from high to Postural tone = varies from high to mediummedium

Asymmetry = poor midline orientationAsymmetry = poor midline orientation

Alignment: UE= may remain in high-low Alignment: UE= may remain in high-low guard positionguard position

Alignment: LE = may see" windswept” legsAlignment: LE = may see" windswept” legs

Pictures

Posture and MovementPosture and Movement

General Movement CharacteristicsGeneral Movement Characteristics

Movement options limited Movement options limited

Which comes first: lack of motivation or Which comes first: lack of motivation or unsuccessful attempts to move ???unsuccessful attempts to move ???

Feeding ChallengesFeeding ChallengesFeeding Difficulty Feeding Difficulty – P & M: P & M: – ImpairmentImpairmentNutritionNutrition– P & M: Physical Traits of MalnutritionP & M: Physical Traits of Malnutrition– Impairment: Blood chemistry Impairment: Blood chemistry AspirationAspiration– P & M:P & M: – Impairment:Impairment:PneumoniaPneumonia







A.A.PrimaryPrimary







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Activities & Activities Limitation Activities & Activities Limitation Locomotor Skills Locomotor Skills Non Ambulatory Non Ambulatory

CommunicatesCommunicates Limited Communication Limited Communication usually Non Verbalusually Non Verbal

Basic ADL’s Basic ADL’s Totally dependent on Totally dependent on caregivers for all ADLscaregivers for all ADLs







A.A.PrimaryPrimary







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Participation & Participation Participation & Participation LimitationsLimitations

Participation:Participation:

Equipment supports children out in Equipment supports children out in community with caregiverscommunity with caregivers

Participation Limitations: Participation Limitations:

Difficult for families to get children out of Difficult for families to get children out of the home the home

Problem intensifies as Caregivers AgeProblem intensifies as Caregivers Age

FinancesFinances

TreatmentTreatment

Think Think

FunctionFunction

Equipment Critical for Child and FamilyEquipment Critical for Child and Family

– Seating SystemsSeating Systems

– StandersStanders

Essential for Child’s Health and Well BeingEssential for Child’s Health and Well Being

Prevention of Secondary ImpairmentsPrevention of Secondary Impairments

Treatment: ProsTreatment: Pros

Positively Influences Quality of Life:Positively Influences Quality of Life:– Hygiene and Ease of Care by CaregiversHygiene and Ease of Care by Caregivers

– Respiratory functionRespiratory function

– Cardiac functionCardiac function

– Caregiver and Child Bonding / Caregiver and Child Bonding / InteractionsInteractions

– Childs Personality Childs Personality

– Comfort of Child and Play Options Comfort of Child and Play Options

Treatment: ProsTreatment: Pros

Decreases medical complications:Decreases medical complications: – IllnessIllness

– ContracturesContractures

– Pressure areasPressure areas

Treatment Concerns Treatment Concerns

Therapist perspective:Therapist perspective:Behavior: Cries, Behavior: Cries, Motivation: Motivation: Progress Slow:Progress Slow:Feedback: Difficult to ReadFeedback: Difficult to ReadFrequent Illness: Frequent Missed Frequent Illness: Frequent Missed Appointments Appointments Medical Issues: Medical Issues:

Treatment VideosTreatment Videos

Medical Issues Medical Issues

Team Approach CriticalTeam Approach Critical

Nutritional NeedsNutritional Needs

Seizure Medications Seizure Medications

Spasticity ManagementSpasticity Management

Surgical IssuesSurgical Issues

Pain ManagementPain Management

BibliographyBibliography

Caulton JM. A randomised controlled trial of Caulton JM. A randomised controlled trial of standing programme on bone mineral density in standing programme on bone mineral density in non-ambulant children with cerebral palsy. non-ambulant children with cerebral palsy. Arch Arch Dis ChildDis Child. 2004;89:131-135.. 2004;89:131-135.Decoufle P and Autry A. Increased mortality in Decoufle P and Autry A. Increased mortality in children and adolescents with developmental children and adolescents with developmental disabilities. disabilities. Paediatric and Perinatal Paediatric and Perinatal Epidermiology.Epidermiology.2002;16:375-382.2002;16:375-382.Gajdosik, CG, Cicirello N. Secondary Conditions Gajdosik, CG, Cicirello N. Secondary Conditions of the Musculoskeletal System in Adolescents of the Musculoskeletal System in Adolescents and Adults with Cerebral Palsy. and Adults with Cerebral Palsy. Physical & Physical & Occupational Therapy in Pediatrics.Occupational Therapy in Pediatrics. 2001;21(4):49-68 2001;21(4):49-68


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


Krakovsky et al. Functional changes in children, Krakovsky et al. Functional changes in children, adolescents, and young adults with cerebral adolescents, and young adults with cerebral palsy. palsy. Res Dev DisabilRes Dev Disabil. Jun 10, 2006;. Jun 10, 2006;

Persson-Bunke, M. Windswept hip deformity in Persson-Bunke, M. Windswept hip deformity in children with cerebral palsy.children with cerebral palsy. J Pediatric J Pediatric OrthopedicOrthopedic, Part B. 2006 Sep;15(5):335-8. , Part B. 2006 Sep;15(5):335-8.

Pin TW. Effectiveness of static weight-bearing Pin TW. Effectiveness of static weight-bearing exercises in children with cerebral palsy. exercises in children with cerebral palsy. PEDIATR PHYS THERPEDIATR PHYS THER. 2007;19:62-73.. 2007;19:62-73.


Schwartz, Lauren; Engel, Joyce M. and Mark P. Schwartz, Lauren; Engel, Joyce M. and Mark P. Jensen MP. Pain in persons with cerebral palsy. Jensen MP. Pain in persons with cerebral palsy. Archives of Physical Medicine and Archives of Physical Medicine and Rehabilitation. Oct 1999; 80:10 (1243-1246). Rehabilitation. Oct 1999; 80:10 (1243-1246). Ward K. Low magnitude mechanical loading is Ward K. Low magnitude mechanical loading is osteogenic in children with disabling conditions. osteogenic in children with disabling conditions. Journal of Bone and Mineral ResearchJournal of Bone and Mineral Research. . 2004;19:360-369.2004;19:360-369.

Children with Severe / Profound Children with Severe / Profound ChallengesChallenges

Adapted from Adapted from

Margo Prim Haynes, PT, DPT, MA, PCS Margo Prim Haynes, PT, DPT, MA, PCS Pam Cannon PT Pam Cannon PT

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