9/16/2018. Severe Moderate Minimal

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1 Apply and get accepted (6 months) Write or find a systematic review (3 years) Get a group of experts (meet them at the AACPDM party) Write it (1 year) Get it approved/accepted/published (6 months) Ginny Paleg, PT, DScPT USA Maureen Story, BSR PT/OT Canada Roslyn Livingstone, MSc(RS) OT Canada Elisabet Rodby-Bousquet, PT, PhD Sweden Mark Romness, MD USA Christopher Lunsford, MD USA Garey Noritz, MD USA Sharon Eylon, MD Israel Julia Looper, PT, PhD USA Kathy Martin, PT USA Lourdes Macias, PT Spain Target Population: Neonates/Infants/Children (ages 0-6 years) who have moderate or severe central hypotonia (included benign congenital hypotonia) which may impact activity and participation in family routines, and/or achievement of developmental milestones. Target Clinical Providers: Physicians, Therapists and Nurses caring for Neonates/Infants/Children/Youth with central hypotonia Hypotonia syndrome is defined as a human movement system syndrome characterized by decreased strength, increased flexibility/muscle extensibility, joint hypermobility, decreased activity tolerance, delayed motor abilities or skills, leaning on supports, and rounded shoulder posture (Martin, 2005). Hypotonia has been defined, in the past, as reduced resistance to passive movement, without a standard way to measure this. Other terms for hypotonia include; central hypotonia, floppy baby syndrome, benign congenital hypotonia, and neonatal Experienced clinicians often rate the level of severity (mild, moderate and severe) by the feel of the muscle belly in combination with the severity of motor impairments. Central Hypotonia means the origin on the pathology is from the brain and present in the trunk and limbs or trunk only. 1

2 1. Vertical Suspension or SlipThru 2. Head lag Hip Abduction 3. Poor Prone Suspension 4. W Sitting or Frog sitting 5. Excessive Hip Abduction 6. Excessive Ankle Dorsiflexion 7. Scarf Sign 8. Rounded Spine and/or Shoulder Posture 9. Protruding Abdomen 10. Ragdoll Posture/Feel 1. We want early identification of infants for which central hypotonia may be the presenting symptom. 2. We want infants and children to have early access to effective intervention strategies including orthotics; treadmill training; massage; seating, standing and mobility devices. 3. We want children with moderate and severe central hypotonia to have access to licensed pediatric therapists knowledgeable about Severe Moderate Minimal 2

3 Refer all children not sitting independently for 30 seconds by age 8-9 months adjusted age Massage (effleurage, moderate firm strokes) Treadmill (before onset of independent gait and across the lifespan). Orthotics (after onset of independent ambulation (defined as 4 independent steps), wear 50% of standing/weight bearing time). Use least restrictive possible (some models have free forefoot and open heel to maximize sensory input) Ankle weights (very light; 1/3 weight of lower limb) Gait trainer (for children who do not walk in the community/outdoors/indoors independently) Group exercise program Jumping and biking Orthotics (before onset of independent ambulation, after onset of pulling to stand and cruising when ankle instability/hypermobility is interfering with upright exploratory behavior, wear 50% of standing/weight bearing time). Use least restrictive possible (some models have free forefoot and open heel to maximize sensory input) Postural management Power mobility (for children who are not exploring, crawling and/or walking) Sensory motor therapy Stander (for children who do not stand independently 60 min/day) Supportive seating (for children who cannot sit and play hands-free independently) Tummy time (90 minutes/day) Whole body vibration (low hertz, less than 20 min/day) Compression garments Refer all children who are not sitting interpedently, by 9 months corrected age, to a specialist (Developmental Pediatrician, Neurologist, Physical Medicine, etc.). Child should be seen before their first birthday. Refer all children with moderate and severe hypotonia to a specialist (Developmental Pediatrician, Neurologist, Physical Medicine, etc.). Child should be seen before their first birthday. Consider hip surveillance for all children who are non-ambulatory by age two years. Refer all infants who lack fidgety movements (between age 2-5 months adjusted age) and/or who have a critical HINE score (between ages 3-24 months) to a pediatric PT or OT who is specifically trained in neurological impairments. The interventions recommended include CIMT, HABIT, GAME, COPCA, UPBEAT, (should I list more?). Passive and non-evidence-based interventions should be avoided (e.g. classic NDT, Reflex- Integration, Vojta, Anat Baniel, MEDEK, Patterning, etc.) Reduced resistance to passive movement, without a standard way to measure this. Other terms for hypotonia include; central hypotonia, floppy baby syndrome, benign congenital hypotonia, and neonatal Van der Mache (1986) showed that relaxed normal limbs fell at the same rate as hypotonic limbs and concluded that passive movements were of no use to detect Woops! So the NIH definition didn t hold up It s just one study Video from google 18 3

4 AACPDM levels do not connect directly to the traffic light system There are some guidelines for CEBM and AAN, but they are designed for drug trails with N>100 Everything can t be yellow Sunny Hill in Vancouver, Canada designed a rating system that converts to traffic light system specifically for rehab studies We used this system because we believe it helps clinicians make better decisions RECIPE Massage and increased tummy time (90 min) from birth (start BEFORE 11 weeks of age) Consider orthotics when child starts to pull to stand and cruise, but only wear ½ waking time, 1-2 h hrs/day Around this time, start daily intensive (8-12 min/day.8-1.0mph ) treadmill WITHOUT orthotics (or gait trainer?) After the child is walking, use orthtotics (SMO, UCB or SureStep) outside and in school (still need some time at home barefoot) Every year or so do a 1-2 week bout of intensive treadmill training GREEN LIGHT, GO! 1. Massage (effleurage, moderate firm strokes) 2. Treadmill (before onset of independent gait and across the lifespan) 3. Orthotics (after or before onset of independent ambulation, before or after onset of pulling to stand and cruising when ankle instability/hypermobility is interfering upright exploratory behavior, wear 50% of standing/weight bearing time). Use least restrictive possible (some models have free forefoot and open heel to maximize sensory input) 4

5 YELLOW 1. Ankle weights (very light; 1/3 weight of lower limb ) 2. Gait trainer (for children who do not walk independently) 3. Group exercise program 4. Jumping and biking 5. Postural management 6. Power mobility (for children who are not exploring, crawling and/or walking) YELLOW 7. Sensory motor therapy 8. Stander (for children who do not stand independently 60 min/day) 9. Supportive seating (for children who cannot sit and play hands-free independently) 10. Tummy time (90 minutes/day) 11. Whole body vibration (low hertz, less than 20 min/day) 12. Compression garments Smithers-Sheedy H, Badawi N, Blai E, Cans C, Himmelmann K, Krägeloh-Mann I, McIntyre S, Slee J, Uldall P, Watson L, Wilson M What constitutes cerebral palsy in the twenty-first century? Dev Med Child Neurol Apr;56(4): RECIPE Massage and increased tummy time from birth (start BEFORE 11 weeks of age) Consider orthotics when child starts to pull to stand and cruise, but only wear ½ waking time, 1-2 h hrs/day Around this time, start daily intensive (8-12 min/day.8-1.0mph ) treadmill WITHOUT orthotics (or gait trainer?) After the child is walking, use orthtotics (SMO, UCB or SureStep) outside and in school (still need some time at home barefoot) Every year or so do a 1-2 week bout of intensive treadmill training ginny@paleg.com 5