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Cerebral Palsy - What's Next in Childhood Diagnosis

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Media Type

Online Resource

Reviewed Date

Jul 9, 2021

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

What is CP? - Cerebral Palsy Foundation (yourcpf.org)
See fast and easy understandable information on causes, timing, signs and symptoms. It has a great website complete with a video library, fact sheets and access to a CP Channel - Free App by linking to the hyperlink below.

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
Parent to Parent tips, videos, treatments, helpful advice.
PHONE: 905.525.9140 ext. 27850 Ontario, Canada

Cerebral Palsy Health Apple Podcast with Jen Lyman < download and listen
This podcast is a place for conversations with experts about issues related to cerebral palsy that affect health, fitness, function and participation. 

CP Channel - free Cerebral Palsy Foundation App

Recommended book: Cerebral Palsy: A Complete Guide for Caregiving, 3rd ed. by Freeman Miller.
 

Teens and Young Adults

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TeensHealth – Coping with Cerebral Palsy Cerebral Palsy (for Teens) - Nemours KidsHealth

CP Research Network – Cerebral Palsy & Puberty | Cerebral Palsy Research Network (cprn.org)

Cerebral Palsy org – early onset puberty in CP children: LETS HAVE THE CONVERSATION (cerebralpalsy.org.nz)

MyChild – Puberty Toolkits | Maturing with Disability | TheCPBLog® (cerebralpalsy.org)https://www.cerebralpalsy.org/blog/puberty-toolkits 

SAILS Workforce 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.

Center for Independence: Through Conductive Education: Young Adults & Employment
This resource aids each stage of a child's development with education, and building on motor skills, strength and endurance to help support independence. Paid internships and education opportunities can be sought through working with their programs. They have three locations in Illinois. 1-708-588-0833

You May Also Be Interested in: Cerebral Palsy - Navigating Adult Life
 

Research

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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

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.

Cerebral Palsy: Hope Through Research | National Institute of Neurological Disorders and Stroke (nih.gov)

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.

 

Treatment Options

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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.

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

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