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
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.
As the child develops, importance is placed on experiences that lead to successful adulthood as exemplified in CanChild's "My Favorite Words" video.
CanChild – Resources:
Parent to Parent tips, videos, treatments, helpful advice.
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.
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.
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 firstname.lastname@example.org for more information on eligibility criteria.
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