a conversation with pt - little people of america
TRANSCRIPT
Acknowledgements
Nemours/A.I. duPont Hospital for Children: Skeletal Dysplasia Team
– William Mackenzie MD
– Michael Bober MD
– Jeffrey Campbell MD
– Mary Theroux MD
– Ricki Carroll MD
– Suken A. Shah MD
– W. Stuart Mackenzie MD
– Colleen Ditro MSN, CPNP
– Mary Ellen Little BSN, RNC
– Angie Duker MS, CGC
– Andrea Schelhaas MS, CGC
– Karen Turner MSPT, BSPTS-C2
Nemours/A.I. duPont Hospital for Children: Wheelchair Seating Specialist
– Denise Peischl BS, BME
Patients and families
I have no financial, professional or personal association with any of the brand named products listed or pictured in this discussion.
Disclosures
Insights – Disclosures - Precautions
The contents of this slide presentation are meant only as a reference.
The information contained in this power point is not a substitute for appropriate medical intervention.
Please seek immediate medical attention if you are experiencing: new or increase symptoms of: radiating pain or numbness or tingling or loss of bowel or bladder control.
For concerns related to your mobility and physical habilitation, please consult your local personal medical provider (occupational or physical therapist) to assist you with safely progressing an individualized exercise program.
Slow, persistent progress is expected, rarely fast results!
Routine, daily maintenance activities and/or exercises are almost always necessary to sustain improvements made after a series of therapy sessions.
Consulting a physical therapist
Difference between OT (occupational therapy) and PT
When to seek an OT or PT
Establishing goals
Defining “problem list”
How might my skeletal dysplasia affect goal attainment?
School-Based versus Medical Model
School-based physical therapy:
– Provided so a student with a physical, hearing, vision, language and/or cognitive limitation can access the school environment (including classroom and playground!)
– There are slight variations in programs state to state, but ultimately governed by IDEA (Individuals with Disabilities Act), a US federal law
Medically-based physical therapy:
– Typically provided post surgically for individuals who wish to return to or exceed their pre-surgical or pre-injury level of function
Early Intervention: the First Few Years
In general, from birth to 36 months, a child receives family-centered care
Occurs in the home or daycare to help children achieve typical developmental milestones
At 3 years old , a child should move to the preschool model
Services should occur in the least restrictive environment
School Age(school-based)
Consideration of the least restrictive environment for learning
Creation, continuation, and implementation of the IEP (Individual Education Plan)
Provision of supportive services to allow success in the school environment (i.e. adaptation in seating, table height ,and support staff instruction)
Evaluation of changing mobility considerations as educational environments change
“Spend minimal energy on mobility and maximal energy on learning!”
Adapted seating
Rifton Compass
chair
Rifton Activity chair
Stokke Tripp Trapp® chair
Special Tomato®
Soft-Touch Liner
Middle School, High School
(school-based)
As a child progresses through middle school, his motor limitations have usually been adequately adapted, so a decrease in motor –based therapy services is appropriate
Encouragement and support for participation in lifelong recreational fitness activities
Transition to College/Employment and Adulthood(school-based and medically-based)
Evaluation of changing mobility considerations as education environments change
Provide suggestions/recommendations to support lifelong fitness and health (referrals for local and national organizations for adaptive sports)
May recommend short term burst of physical therapy to address: acute changes in endurance, gross motor function, or weight gain.
(Physical therapy then becomes a collaborative effort—the pediatric PT learning about adult interventions and the adult PT becoming more familiar with pediatric onset conditions!)
Transition to College/Employment and Adulthood(school-based and medically-based)
Ergonomic assessment can help maximize the efficiency of the workplace
ErgoChair with adjustable
foot rest by Adaptive Living
Maintaining/Regaining Independent Mobility
Maintaining an active lifestyle (“Do what you like; like what you do!”)
Pelvic floor musculature issues can be addressed by physical therapists specializing in Women’s Health
Management of spinal stenosis
Evaluation of use/appropriateness of wheeled mobility
Post surgical physical therapy
(or post injury)
Begins pre-surgically….! (especially related to obtaining rental equipment!)
Works towards maximizing the person’s abilities within the medical/surgical constraints
Includes communication between inpatient post-operative and outpatient (and/or home-based) therapists
Addresses and problem-solves through any physical limitations caregivers made have related to their ability to care for their child or themselves
Goals of Exercise
FUN!!
Friends
Lifetime pursuit of fitness
Focus on abilities
Encourage teamwork & sportsmanship
Medical Clearance prior to recreation or
sports:
Cervical stability
Cardiac
Pulmonary
Spine
Leg alignment
Injury Happens . . .
Initial intervention and treatment
Rest
Cleared BY PHYSICIAN to resume play
Let’s get wet
Swimming
Water Polo
Fishing
Boating/Sailing
Surfing
Rowing/Crew
Kayaking/Canoeing
Rafting
Water Skiing
Snorkeling/Scuba Diving
Making waves in the pool: why water is
better (or why is gravity so difficult?)
Buoyancy: can be used to assist or resist
Water provides resistance along entire length of arm or leg
Movements can be refined and performed more precisely in functional positions
Sometimes, it just feels good to get weight off your legs
Water exercise equipment suggestions
hydro-fit resistance cuffs
water dumbbells
aqua power swim weights
swim barbell
H2O Equipment
Kiefer cushion float collar
Kiefer water jogger
H2O Equipment
Water Way Babies
neck float
H2O Equipment
Sprint floating fins
Sprint kickboard
water noodles & inflatable arm bands
Dynamic sitting on a
peanut-shaped ball can
help engage core
muscles and is a bit
safer than a round ball.
Non-Traditional & Fun Wheeled Mobility
Zip Zac chair
custom
skateboardSafety 1st
Pre-cycle ride on bikes
SKUUTNovara
Zipper
Scoot
Radio Flyer
Specialized bicycle options
Triton
Freedom Concepts
Bike Friday
Fun “upright” scooters
Travel Scoot
Zap Scooter
Razor
Scooter
(folds for travel)
Manual wheelchair or power wheelchair or
scooter
How do you decide?
– Function of the individual should be the primary deciding factor
– If you can push a manual without it causing significant fatigue then order a manual wheelchair
– If you are fatigued by noon how much learning/work are you going to be able to do for the rest of the day?
Other Considerations
Ease to propel the wheelchair by the user
Ease to push the wheelchair by the caregiver
How difficult is it to transport the wheelchair
Your therapist’s goal for wheeled mobility:
Maintain personal physical mobility
Support endurance
Preserve joint health
Navigating travel
Travel vests & specialty SPICA Cast car seats
EZ-ON VEST BY EZPRO
INC.
R82: WALLAROO OR QUOKKA SPICA CAR SEATS
Automobile Adaptations
Accelerator and brake pedal extenders
Air Travel Plan ahead!
Most air carriers require 48 hours notice for special accommodations
Under 2 years old may sit in parent’s lap
Over 2 year old must use an approved child restraint system (car seat)
All car seats must be placed in a forward facing airline seat
Prohibited restraints:
– Lap held with belly belt
– Vest or harness that attaches to parent
– Most booster seats (check labels for red lettering indicating certified for use on aircraft)
Travel vest for airline use
CARES TRAVEL HARNESS BY AMSAFE INC.
FOR CHILD 22-40 LBS IN UPRIGHT SIT
Taking along assistive or medical equipment
Air Carrier Access Act
the ADA of air travel
Walkers and canes should be permitted on aircraft with passenger, stored appropriately for take off, landing and taxi
Folding wheelchairs that can fit in the cabin closet get priority storage
Assistive devices, medical equipment and wheelchairs or scooters are NOT excess baggage
If the airline must disassemble your equipment, they are required to reassemble it in pre-boarding condition
Other airline travel suggestions and info
Carry a diagram of assembly/disassembly of your wheelchair, in the US have it printed in English and Spanish
Your adaptive equipment and wheelchair or scooter has priority over baggage on arrival to meet you at the gate
Each air-carrier is required to have a CRO (Complaints Resolution Officer) to handle AACA complaints on site at each airport during all operating hours
Check out www.seatguru.com in advance of your flight for availability of: on board storage closet, accessible restroom
Carriers may not accommodate a travel with special needs if
– There are less than 30 seats on the aircraft
– An exit row seat is the only available seat
– May not transport a power wheelchair or scooter if federal travel alert is high (due to batteries)
Government Agencies
FAA: Federal Aviation Administration
NHTSA: National Highway Transportation and Safety Administration
– FMVSS: Federal Motor Vehicle Safety Standards
DOT: Department of Transportation (US/federal)
– New Horizons
TSA: Transportation Safety Administration
FTA: Federal Transit Administration
FRA: Federal Railroad Administration
GPO: Government Printing Office
Equipment that may make travel away from home more
accessible:
Push-up “blocks”
Folding step stool
Mommy’s helper
Seat-2-go by Drive Medical
Special Tomato portable potty seat
OXO Tot Nest
Thank you to each patient, family care-giver and medical team
member that shares their experiences and expertise for the ongoing
pursuit of clinical excellence in the medical treatment of children.