a conversation with pt - little people of america

A Conversation with PT

Karen Turner MSPT krturner@Nemours.org 302 409 6874

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.