Young boy with crutches

Cerebral Palsy - What's Next in Childhood Diagnosis

condition

Media Type

Online Resource

Reviewed Date

Aug 28, 2018

Body

Many parents and caregivers want to know more about what to expect in a childhood diagnosis of Cerebral Palsy. We have put together a list of resources to assist in the understanding and progression. 

 

AACPDM – American Academy for Cerebral Palsy and Developmental Medicine – Care Pathways.
“A Care Pathway is a practical summary, including an algorithm, of evidence informed guidelines or the best evidence, for an aspect of care/services for individuals with childhood-onset disabilities to inform clinical practice.”

Care Pathways are in three sections:  Evidence Summary, Published Evidence, and Practical Tools
https://www.aacpdm.org/publications/care-pathways

 

CP-NET /CanChild : Serial Casting in the Upper Extremity of Children with Cerebral Palsy

Serial casting is an intervention practice that is becoming more commonly used in occupational therapy (OT) practice, in addition to other treatment modalities/protocols for children with cerebral palsy to manage spasticity and related contractures.
http://cpnet.canchild.ca/en/resources/82-serial-casting-in-the-upper-extremity-of-children-with-cerebral-palsy

 

As the child develops, importance is placed on experiences that lead to successful adulthood as exemplified in CanChild's "My Favorite Words" video.

'F-Words' in Childhood Disability from CanChild on Vimeo.

CanChild – Resources:
Parent to Parent tips, videos, treatments, helpful advice.
https://canchild.ca/en/diagnoses/cerebral-palsy/related_resources

 

Cerebral Palsy Research Registry:
Cerebral Palsy Research Registry (CPRR) is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy. We believe that by working together, families and researchers can make a difference in the lives of people affected by cerebral palsy.

Representatives from Northwestern University Department of Physical Therapy and Human Movement Sciences, Shirley Ryan Abilitylab, and the University of Chicago have developed and continually improve the CPRR to promote research and new discovery in the field of cerebral palsy.

Initially enrolling children and adults with cerebral palsy in the Chicagoland area, the Cerebral Palsy Research Registry has been expanded to accommodate national participant registration as well as additional participating institution collaboration.
https://www.cpregistry.org/index.php

 

Phenol Block:
What is phenol, and how will it help my child? 

"When  phenol is used for a nerve block it is important to place the phenol as close to the nerve as possible, since the action of the medication is directly to the nerve. To find the nerve an electrical stimulation will  be used with a nerve stimulator. Since this is uncomfortable, and the localization needs to  be precise, your child will be under sedation  by the Lurie’s anaesthesiology team.   Unlike  the botulinum toxins, the  effect of phenol will be  seen immediately and can last longer, up to 6-9 months post injection.

There are certain nerves that are commonly targeted for children  with CP and are tied to specific goals.  Botulinum toxin injections  can  also be given under sedation  with localization by ultrasound.

Talk to your  doctor  and therapists about the goals of the injection and indications  for these treatments."

Dr. Deb Gaebler 
Director of Cerebral Palsy Program,
Shirley Ryan Ability Lab

 

NIH – News in Health: Robotic Device Helps Kids with Cerebral Palsy (exoskeleton for CP (Video/article)

NIH researchers have been developing a robotic device to help improve the way children with cerebral palsy walk.
https://newsinhealth.nih.gov/2017/10/robotic-device-helps-kids-cerebral-palsy

 

SAILS Workfore Development Program - Lurie Children's Hospital

The SAILS Workforce Development Program places young adults in a six-week paid internship program, along with a one-week training prior to starting.
Please contact Rebecca Boudos, LCSW at 312.227.6391 or e-mail transitionteam@luriechildrens.org for more information on eligibility criteria.

 

You May Also Be Interested in:

Cerebral Palsy - Navigating Adult Life

 

This content is for informational purposes only and may not be comprehensive. Information contained does not imply an endorsement from Shirley Ryan AbilityLab, and does not replace the advice of a qualified healthcare professional.  See here for further details.
© Shirley Ryan AbilityLab (formerly Rehabilitation Institute of Chicago)
Henry B. Betts LIFE Center – (312) 238-5433 – https://www.sralab.org/lifecenter

Resource Location

Address

Shirley Ryan AbilityLab
355 East Erie
Chicago, IL 60611
United States

Get more information about volunteering

Save now, read later.

Latest Updates

view all