1. Lisa Carter, PT Children With Special Health Care Needs Amy Shuckra, DPT, PCS Shriner’s Hospital for Children Conference Update

2. Objectives Review CP Classifications Update on CP Diagnoses & Prognosis Effective Evidence Based Therapy for Children with CP Introduce latest in Australian Hip Surveillance Discuss Gillette Selective Dorsal Rhizotomy in CP Review newest information in muscle morphology in CP

3. CP Classifications Reviews GMFCS I: Handles objects easily II: Handles objects with reduced quality/speed III: Handles objects with difficulty, needs modifications IV: Handles limited selection of objects in adapted situation V: Does not handle objects

4. Early Intervention for CP: New Tools CP diagnosed in 3/1000 children Average age for dx of CP is 19 months Literature suggests that intensive, repetitive, task-specific intervention should start very early while the brain is most plastic Early motor assessment tools, brain imaging and neurological exams all help predict CP

5. CP Diagnoses Novak, 2014

6. Risks for CP

7. Infant Assessment

8. Neuroimaging CP

9. Prognosis for CP

10. Associated Conditions

11. Effective Evidence Based Therapy for Children with CP Iona Novak CP Alliance

13. CP Treatments: Child-Active Rehabilitation Child active vs. child passive Child Passive: “done to the child” and/or involves nonspecific motor stimulation Child Active: actively practices real life tasks New best practice paradigm Child active induces neuroplasticity Examples: home programs, goal directed training, bimanual training

14. Child-Active 10 Principles Iona Novak CP Alliance 1.Use it or lose it 2.Use it and improve it 3.Specificity: task specific 4.Repetition matters 5.Intensity matters 6.Time matters 7.Salience matters: motivation+attention+rewards increased learning 8.Age Matters 9.Transference 10.Interference

15. Child-Active Rehab: Goal Directed Training

16. Child-Active Rehab Home Programs

17. CP Treatments Compensatory & Environmental Society and environment change instead of child changing Specialized equipment Seated mobility Communication devices Promote inclusion and independence

18. CP Treatments: Health & Secondary Prevention Manage child’s health and comorbidities Seizure management, nutrition Prevent the natural history Orthopedic surgery, bracing, casting/splinting, spasticity management Hip surveillance

19. Australian Hip Surveillance Hip displacement risk GMFCS III: 23%, GMFCS IV: 24%, GMFCS V: 47% (Larnert et al, J Child Orthop 2014 Mar 8(2): 129-34) “Standards of care” developed by multidisciplinary team Guidelines for evidence based timing and intervention based on GMFCS level Refer to handout

26. Selective Dorsal Rhizotomy Gillette Hospital Why? Multidisciplinary Approach Candidacy for SDR Technique Cauda equina or conus Rehab after SDR Some inpatient for 6 weeks Outpatient: 5x/ week for 1 month, continue 2- 3x/week for 6 months Outcomes

27. Muscle in CP Contractures Shortened muscles with highly stretched sarcomeres Altered extracellular matrix, reduced satellite cells, and deranged transcriptional regulation Muscle composition & morphology Increased intramuscular fat Decreased muscle volume Decreased fascicle length Altered muscle and tendon interaction Richard Lieber and Adam Shortland Smith et al 2011 Laser diffraction; muscle.ucsd.edu

28. Intervention to Muscles in CP Evolution of current model Based on new information on muscle CP muscles can respond positively or negatively to intervention Martin Gough, MD

29. Interventions in CP Stretching (passive) Moderate to high quality evidence indicates no short or long term benefit (Katalinic 2010) Immobilization leads to ↓ protein synthesis leading to atrophy and reduced function Botulinum toxin Decreases muscle volume Some studies suggest ineffective in preventing deformity (Tedroff et al 2009) Recent animal study shows impairment in cell impairment in muscle cell (Mukund et al 2014) Surgery Alters musculotendinous unit passive length, acute weakness Potential to increase muscle volume (Fry et al 2007) SEMLS: limitations on mobility, weakness Strengthening Improves muscle volume but may no be associated with improved function (McNee et al 2009) Shift Our Focus Muscle Length → Muscle Growth

30. Free Paper Highlights CP CHILD Questionnaire Sensitive to change in children with severe CP undergoing surgery for scoliosis Questionnaire Download: http://www.sickkids.ca/Research/CPCHILD- Questionaire/CPCHILD-Project/CPChild-questionaire/index.html Recommended as the primary outcome measure for spine interventions for children with severe CP Kinematic Profiles of GMFCS III Functional Subgroups IIIA: able to increase speed IIIB: unable to increase speed III subdivision supported by GDI (gait deviation index) May guide surgical management

31. CP Registries Multiple throughout the world CPRR: Cerebral Palsy Research Registry United States Registry Multi-institutional collaborative effort Aim to promote CP research across the lifespan Long term goal: collaborate with institutions across the country to create National US-CP Registry www.cpregistry.org

32. Stem Cell Tourism Timothy Caulfield, LLM FRSC “Unproven stem cell-based treatments” Key Issues Currently no credible peer-reviewed evidence There are real risks involved Patient testimonials and information on blogs should be viewed as unreliable Media portrayals might lack balance The services should not be viewed as potentially beneficial experimental treatments It is highly unlikely that a single stem cell therapy will be developed that can cure or treat numerous diseases The stem cell tourism industry is driven by profit and enabled by evasion of oversight and accountability VOL 58: APRIL AVRIL 2012 | Canadian Family Physicien Le Médecin de famille canadien

33. Family Panel Sibling and parent interaction Mental health issues Anxiety, depression Need to increase resources Parents wanting earlier diagnosis

34. Websites about CP cpdailyliving.com cerebralpalsy.org.au childhooddisability.ca canchild.ca ucp.org scope.org.uk cdc.gov neurodevnet.ca pathways.org reachingforthestars.org handicapthis.com birth23.org

35. References Novak I. Evidence-Based Diagnosis, Health Care, and Rehabilitation for Children With CP. J Child Neurol (2014) 29: 1141-1156.