The Role of Therapy in your child’s life.

Being a part of the team!

2016 Annual CureSMA Conference

▪ Karen Patterson, PT, MS, PCS▪ University of Wisconsin-Madison

▪ Annie DeMark-Thompson, OT▪ American Family Children’s Hospital

Special Thanks to:▪ Terri Carry, PT

▪ Children’s Hospital of Colorado

▪ Kristin Krosschell, PT, DPT, MA, PCS▪ Northwestern University Feinberg School of Medicine

Disclosure

The authors have nothing to disclose

.

©2002‐2016

• Topics to discuss :– Family frustrations – How to create your “team” and be an active member– What we know and don’t know regarding therapy interventions– Exercise/activity and play ideas– Discuss different models of therapy– How often /How much?– Other types of therapies – what are they and potential benefits

• Open dialog• Learn from everyone in the room

Plan for Today…

©2002‐2015

▪ Lack of experience with SMA by therapist▪ You may not be able to choose your therapist

▪ Uncertainty about quantity needed for your child▪ Which disciplines are most appropriate for your child▪ We do not have much evidence to support which “type” of

therapy is best.▪ You are pioneers… But that can be exhausting!!!!

Families’ Frustration

©2002‐2015

▪ Role of Family Role of Therapist▪ Expectation for two-way communication

▪ Best outcomes: ▪ Consideration of values / lifestyles of both child and family

▪ Collaborative home programs

▪ Incorporation of recommendations into daily routine

▪ Focus on function

▪ Start prevention early

Start building your team

©2002-2015

▪ Therapy will not “cure” SMA but can have an impact on quality of life▪ Look for therapist that is willing to learn▪ Inform them of the CureSMA resources▪ Ask about continuing education courses they have attended▪ Contacting therapists in multi-disciplinary NMD clinics for resources▪ Look for therapist that is willing to try▪ Connection with equipment vendor

▪ Prescription from MD for PT,OT and SP• School and Early Intervention may not need

▪ Watch number of visits and insurance coverage

Tips in finding a Therapist:

©2002-2015

▪ Occupational Therapist (OT)▪ Physical Therapists (PT)▪ Speech Therapist (SP or SLP)▪ Physiatrist (Rehab Medicine Physician)▪ Augmentative and Alternative Communication (AAC)

▪ Maybe be an OT, PT or SP

Therapist “Definitions”

©2002-2015

▪ Occupation = Activity ▪ For child, this includes Playing, Learning, and Socializing

▪ Work with children and families to help them succeed in daily activities (ADL’s).

▪ Help with basic challenges, from creating morning routines, to choosing appropriate toys and access to them, to recommending equipment.

▪ Focus on functional activities such as feeding, dressing, interacting with materials

▪ May recommend and fabricate splints, teach exercises to maintain ROM and improve function for UEs.

Occupational Therapist

©2002-2015

▪ Assist each child in reaching their maximum potential to function independently and to promote active participation in home, school, and community environments.

▪ Facilitates motor development and function, improves strength and endurance, enhances learning opportunities, and eases challenges with daily caregiving.

▪ Focus on mobility, and may recommend equipment such as special seats, strollers and wheelchairs or may recommend orthotics (braces) and standers.

▪ They often focus on leg, foot and trunk exercises to maintain range of motion and strength and to improve function.

Physical Therapist

©2002-2015

• Help with language development, feeding issues and range of motion of the jaw. – Language may be verbal or augmentative communication

• May be involved in a swallow study to assess for safety.• Uses X-ray to look at whether or not food or liquid is

entering the lungs, which could cause aspiration.

• Please see nutrition booklet for some of these issues.

Speech Therapist

©2002-2015

• A physician who focuses on all of the rehabilitation components of care.

• They work closely with the different therapists and may write the prescriptions and make recommendations for orthoses, therapy, and equipment.

Physiatrist (Rehab Physician)

©2002-2015

• Includes all forms of communication that are used to express thoughts, needs, wants, and ideas.

• May be unaided or aided – goal is Independent• May be OT, PT or SLP

Augmentative and Alternative Communication Specialist

©2002-2015

• What do we know and what don’t we know?

• “Evidence-Based Practice”:– Using research evidence for clinical decision making– Pediatric therapists have many barriers to this process– Research in Pediatrics often has low strength levels

Interventions and Frequency

©2002-2015

Strengthening and Exercise

• Consequences of Muscle weakness (or lack of use):

• May lead to difficulty with movement

• Difficulty with being upright and putting weight through your legs

• Difficulty with positioning and play.

• AND - May lead to muscle tightness and asymmetries that could lead to joint contractures and discomfort.

What we KNOW

©2002-2015

• May be of value to maintain and increase strength for function.

• Although we can usually predict which muscles will get tight and which muscles will be the weakest: – we cannot always be sure what activities and

exercises will best address these issues.

• Maintaining and/or increasing range of motion (ROM) is beneficial but does it improve function?

What we THINK we know Therapeutic Exercise and Activity

©2002-2015

Strength Training: What we KNOWExercise in a home-based, individualized program may maintain strength and increase sense of well-being for children and adolescents with type 2 and type 3 SMA. (Lewelt et al, 2014)

• Guided progressive resistive exercise and strength training • Well tolerated and may increase strength in children and adults with SMA, but

further study in larger groups are necessary.

Cycle exercise improves VO2max in those with SMA 3– without causing muscle damage, but it also induces significant fatigue. (Madsen et al 2014)

We do not yet know when or if exercise leads to overwork induced muscle damage.

Important to use the muscle you have!!!• A muscle that is not used gets weaker

©2002-2015

Other ways to exercise that may be more engaging

©2002‐2015

Flexibility

Why are children with SMA at risk for tightness?

• Weakness : Imbalance▪ affecting some muscles more than others▪ Difficulty moving so joints stay in one position for a long

time

• Growth/ weight gain▪ places a greater demand on available muscle strength

Flexibility: What we KNOW

©2002-2015

Benefits of Range of Motion, Movement and /Massage• Function and Positioning

• More options

• Stability

• Pain and Comfort• A tight joint can hurt or can get stretched to far easier

• Dressing can become difficult• Maintains skin elasticity• Improves circulation (blood and lymphatic) • Provides sensory input

Flexibility: What we KNOW

©2002-2015

▪ Holding a stretch longer is better for other conditions • Splints or braces may hold positioning longer

▪ Consistency is better:• Daily routines that are established will assure that stretches are

done more frequently.

▪ Prioritize Muscles:• Your therapist can help you do this

How often/How long: What we THINK we know

©2002-2015

Take Home Ideas to Use and Share

Positioning for Function• On your back (supine)

• On your stomach (prone)

• Sidelying

• Sitting

• Standing/Walking

• Respiratory Status • Work toward increasing tolerance or maintaining

upright, as possible • Joint contractures

General Considerations

©2002-2015

• Often well tolerated• Consider the use of wedges to start working towards

upright – monitor respiration• Small pieces of foam cut into different shapes, and

weighted bean bags to support and position extremities• Promote midline

Supine (on your back)

©2002-2015

•Work on Head Turning :

• flashlight games in darkened room;

•“I spy with my little eye”

• following and popping bubbles.

•Leg slings and kicking

•Holding foam ball, sponges between legs/feet

•Music time :

•bells on feet, hit drums, make shift “cymbals”, etc.

•Consider use of hammocks and reclined swings if available for vestibular input

Function In Supine

©2002-2015

•Often not well tolerated•pressure on ribcage/chest may increase respiratory effort

•Modify to semi- prone for those that can tolerate•great way to interact with environment and weight bear thru shoulders!

•Use therapy ball, over leg, on parent’s chest, etc.

PRONE OR “TUMMY TIME”

©2002-2015

Sidelying

©2002-2015

• Allows midline head position• Use support to keep in midline if needed (body pillows)

• Child can see what their hands are touching• Improve access to toys • Allows hand or toy to mouth• Shoulder motion is gravity eliminated

– weaker muscles may get more function here than on back

• Hip and thigh muscles also have gravity eliminated help

• Sling supports may be helpful in sidelying:• pop bubbles with hands or feet, or engage in sensory play

with shaving cream

• Place a mirror, or writing or magnet board or Ipad

• Great position for activating switches for cause/effect toys

• Hang toys from overhead dowel or baby gym

• Lightweight oral toy - bring to mouth

Function in Sidelying

©2002-2015

• Vary amount of incline and upright • Tray with lip on it to contain balls and moving toys (cars, hex bugs) • Optimal amount of support to promote function (varies)

Sitting

©2002-2015

Special Tomato Activity Chair

Leckey Squiggle Activity Chair

• Sensory play, magnetic toys, lightweight toys • o-balls, dixie cups etc.

• Can use music stand or mounts to bring materials to eye level• Nice place for mirror and some self cares

• may use tray or foam blocks for forearm • allows easier lever action

• Suction cup toys and mounts• encourage supination with vertical objects

• Reaching if able • knocking down towers,

• Use foot plates to help with ankle positioning • If able, nice to be in a swing for vestibular movement • Use of therapy ball and engaging core, balance, etc.

• Wheelchair mobility and interacting with environment and peers

Ideas for Function in Sitting

©2002-2015

•You can do the same things in standing as you can in sitting

•Use a tray or other work surface at appropriate height.

Activities in Standing

©2002‐2015

Technology Can Help

©2002‐2015

“Partner Assisted Scanning” No technology Visual or auditory – try to pair More than just yes/no

“Aided Language Stimulation” Be sure you have child’s attention Verbal message + icons Complete sentences – developmental RESPOND, RESPOND RESPOND

©2002‐2015

Communication Aid Terminology

Switch Interfaces Key guards and keyboard accessibility Mounts Switches Cases Stylus Environmental Control Websites Mobile Arm Supports

WWW.PINTEREST.COMBOBBIJOHNSONAAC

©2002‐2015

RESOURCES FOR HARDWARE

www.symbaloo.com/mix/bobbijohnsonaac

©2002‐2015

Wilmington Robotic Exoskeleton (WREX)▪ Most appreciated by persons with mid range strength▪ Provides support to arms and legs to allow movements while

removing the effects of gravity.▪ By adjusting the point of “balance” the arm is more mobile.▪ External power of elastic elements▪ Aids in: Feeding, Raising hands, Typing, Playing, Drumming, Fine

motor skills

©2002-2015

Playskin Lift and Playskin Air TM

▪ Garment based orthosis

▪ Provides varying levels of assistance to young infants with arm weakness who cannot yet reach or move their arms well

▪ Less bulky than other upper extremity systems

▪ Tip of the ice berg….new versions coming!

©2002-2015

DIFFERENT MODELS OF DELIVERY

©2002-2015

• Birth to Three

• Medical Model

• School Based Services

• Adjunctive/alternative

• Federal Legislation: IDEA - Part C • Provides Funding and Criteria for states, which

delegates to individual counties.

• Early Intervention services must be provided in Natural Environment to the extent appropriate

• Can bill insurances

• Can have parental cost sharing

©2002-2015

Birth To Three (early intervention)

Multi-disciplinary : 2 or more professionals from different disciplines - direct service

Interdisciplinary: A group of professionals who each represent an area of expertise; therapy often direct service

Transdisciplinary: as above, but may overlap and provide training to other team members

Primary Service Provider: Trans service delivery by 1 person with supporting services via joint visits as needed

©2002-2015

Birth To Three Model Definitions

A style of interaction vs. a model of service delivery

“Interactive process of observation and reflection in which the coach promotes the parent/caregiver’s ability to support a child’s participation in everyday experiences with family members and peers across environments”

©2002-2015

0-3 Coaching Model

Ages 3 -21• required by federal and state laws

Provided at no cost to the parents for students who are eligible for special education services

OT and PT are related services• educational team must determine there is a need to

support school performance

SCHOOL BASED THERAPY SERVICESEducational Model

©2002-2015

• Full team meetings (M-teams) every 3 years minimum.

• IEP developed with goals and reviewed annually.

• Be specific and include therapies when home bound, specific assistive tech, seating, transportation, etc.

School Based Therapies

©2002-2015

• Provided in clinics, hospitals, homes, and community settings.

• The physician, family and therapist make the decision regarding the amount, frequency, and duration of therapy recommended.– A lot of variation possible - weekly, bi-weekly, monthly, or episodic. Ok to take

breaks and/or come back at higher frequency when clear goals in mind, etc.

• Services are paid for by medical insurance or private pay– insurance may dictate coverage and exclusions.

• Often obliged to not duplicate goals with other providers– 0-3 or school

MEDICAL MODEL SERVICE DELIVERY

©2002-2015

• Swimming/aquatic therapy

• Hippo/equine therapy

• Alternative therapies: • massage, acupuncture, cranio-sacral, chiropractor

OTHER FORMS OF THERAPY

• Buoyancy allows a patient to move with less effort• encourages a wider range of movement

• Enhanced tactile input • Reduces pain and tension in muscles and joints

• Variety of supports available -head control

©2002‐2015

Swimming and Aquatic Therapy

• Horse used as treatment modality• Specially trained PT or OT properly positions child on

horse and directs horse, analyzes response• Improve posture, balance, mobility and function• Watch weight of helmet – may need neck support

©2002‐2015

Hippotherapy

• Massage: manual manipulation of soft body tissues (muscle, connective tissue, tendons and ligaments) to enhance a person's health and well-being

• Acupuncture: a system of complementary medicine that involves pricking the skin or tissues with needles, used to alleviate pain and to treat various physical, mental, and emotional conditions. Originating in ancient China, acupuncture is now widely practiced in the West.

• Cranio-sacral: Craniosacral therapy is a holistic healing practice that uses very light touching to balance the craniosacral system in the body, which includes the bones, nerves, fluids, and connective tissues of the cranium and spinal area.

• Chiropractor: a system of complementary medicine based on the diagnosis and manipulative treatment of misalignments of the joints, especially those of the spinal column, which are held to cause other disorders by affecting the nerves, muscles, and organs.

Choose a practitioner that is well informed about Spinal Muscular Atrophy!!

©2002-2015

Alternative Therapies

Thank you!!

©2002‐2015

Please complete your conference survey at this link:https://www.surveymonkey.com/s/2016AnnualSMAConferenceOr fill out the paper survey in your conference folder.

•All participants who complete a survey by 10:30 am on Sunday June  19th, will have their name entered into a raffle for a brand new iPad!

•The winners will be drawn and announced on Sunday, June 19th at the Closing General Session/It’s a Wonderful Life.

©2002‐2015

CureSMA Conference Survey