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Youth
 

 


Doctor Explains Mysterious CRPS Condition

CRPS, Complex Regional Pain Syndrome, is a rare condition that causes chronic pain throughout a person's body. INSIDE EDITION sits down with Dr. Elliot Krane to find out more.

From the Research Library:

Authors: Stephanie Richards, George Chalkiadis, Raman Lakshman, Jim P. buttery, Nigel W. Crawford
Title: Complex regional pain syndrome following immunisation
Source: ADC Online First, published on 08/01/2012 as 10.1136/archdischile-2011-301307

Author: C.T.H. Tan, Nienke van de Sandt-Renkema, Paul F.M. Krabbe, Daniel C. Aronson c, Rene´ S.V.M. Severijnen
Title: Quality of life in adults with childhood-onset of Complex Regional Pain Syndrome type I
Source: Injury, Int. J. Care Injured 40 (2009) 901-904

Author: Brooke V, Janselewitz S
Title: Outcomes of Children With Complex Regional Pain Syndrome After Intensive Inpatient Rehabilitation
Source: PMR. 2012. In press

By: Jane Brody for the New York Times, October 17, 2011
Personal Health: Ailment Can Steal Youth From the Young

New RND/RSD Site! Check out this club and buddy system and share your story. http://rndrsd.yolasite.com/

New Brochure:
Helping Youth Succeed in School

RSD, My Dad and Me, A downloadable coloring book written by Barbara Schaffer and illustrated by Josh Treiber

Neighborly love lives in Medfield

February 24, 2011, Medfield, Massachusetts
An 11-year-old-girl, Karen Richards suffers from three different incurable diseases that take an incredible financial toll on her family. With the kindness of Doug Masters, a local business owner, the family is able to get their daughter the help she needs to live a more normal life.
Click here to read the story.   

From Medication to Baking Cookies, Children’s Hospital Offers Unique Therapy to Kids in Chronic Pain
January 14, 2011, Stanford, California
The Pain Management Center at Stanford’s Lucile Packard Children’s Hospital, one of the country’s leading pediatric pain clinics, has been a leader in creating a multi-front approach to pain treatment in children, encompassing a combination of medication, physical therapy and emotional and cognitive solutions. 
Click here to read the story.

 

Breakthrough Clinic Helps Kids Cope With Pain
View Video

The viewing of this video is not intended to provide advice on personal medical matters or to substitute for consultation with a physician.

Cleveland Clinic: Pain clinic last resort for children
Source

CLEVELAND -- Most of us have experienced physical pain but imagine it being so intense you can hardly move or be touched. That's life for some teenagers at the Cleveland Clinic Pediatric Pain Rehabilitation Program.

The viewing of this video is not intended to provide advice on personal medical matters or to substitute for consultation with a physician.

Stories of Hope

HuffPost's Greatest Person Of The Day: Mackenzie Bearup, Georgia Teen Who Donates Thousands Of Books To Children In Need
By Dominique Fenton, The Huffington Post

Ayuda que simboliza esperanza para Estefany
Nircia R. Del Rosario Meléndez, Periódico Horizonte
del 2 al 8 de junio de 2010

Alissa's Story (Video)

Parents

Random Eruptions
By Randy Erickson
A father's thoughts on his daughter's CRPS

Parents' Perspective of Their Journey Caring for a Child with Chronic Neuropathic Pain

Publications and Resources

Author: Anita Wright Dennis
Title: Benefits of Homeschooling a Child with CRPS
Source: RSDSA Review: 2012 Vol. 25, Issue 4

Final Progress Report: RSDSA and RSDhope Grant
(Related: RSDSA and American RSDHope Award Research Grant to the Children's Hospital of Los Angeles)

Author: Judy Stone
Title: Have Pain? Are You Crazy? Rare Diseases Pt.2
Source: Scientific American™ February 18, 2014

Author: By Jeff Leen, Published: March 10
Title: When flexible becomes too flexible
Source: The Washington Post

Hope for Children with CRPS: The Mayo Family Pediatric Pain Rehabilitation Center (PPRC)
By David Leslie, MD, PPRC Clinical Director, and Elizabeth A. Carpino, MA, PPRC Clinical Research Coordinator

Author: Logan DE, Chiang G, Condon M, et al
Title: Development of an intensive pain rehabilitation program for children and adolescents with Complex Regional Pain Syndrome
Source: Pediatric Pain Letter. 2010;12(1):1-6. Commentary.

Author: David P. Martin, Tarun Bhalla, Saif Rehman and Joseph D. Tobias
Title: Successive Multisite Peripheral Nerve Catheters for Treatment of Complex Regional Pain Syndrome Type I
Source: Pediatrics; originally published online December 10, 2102; DOI: 10.1542/peds.2011-3779

Author: Jessica P. Kendall
The Healing Power of Video Games
Source: Youth Today, April 4, 2013

The Very Real Pain of RND
From The Children's Institute

Author: Lebel A, Becerra L, Wallin D, et al
Title: fMRI reveals distinct CNS processing during symptomatic and recovered complex regional pain syndrome in children
Source: Brain. 2008;131:1854-1874.

Amplified Abdominal Pain in Children
By Lori Brake, PTA; Jennifer Sherker, PsyD; David Sherry, MD; Kathy Fash, PT, DPT, CSCS, CBIS

Management of Pediatric Patients with Complex Regional Pain Syndrome
By Robert T. Wilder, MD, PhD
(More Medical Articles)

Pediatric CRPS Tri-Fold Brochure
This brochure offers information and resources for the family and friends of youth with CRPS and those who want to help.

Pediatric CRPS Slide Kit (PDF)

Take Flight With Hope: Stories of Hope and Transformation
This brochure offers an array of patient stories, and as Executive Director Jim Broatch, MSW, writes "People make changes, they move forward, they live lives they never imagined they could or would. CRPS brings huge losses, but, as you will read, there are significant gains as well."
Single copies are available free for our members. Additional copies are available for $2 (members) and $3 (non-members).

Websites
(More Related Sites)

http://journals.lww.com/anesthesiology/Fulltext/2009/08000/Lumbar_Sympathetic_Blockade_in_Children_with.24.aspx
Lumbar Sympathetic Blockade in Children with Complex Regional Pain Syndromes: A Double Blind Placebo-controlled Crossover Trial-Meier, Petra M. M.D.*; Zurakowski, David Ph.D.†; Berde, Charles B. M.D., Ph.D.‡; Sethna, Navil F. M.B., Ch.B.§

The Advocacy Center provides consumer-driven services to support people with disabilities and their families in achieving their goals. Through information-sharing, individual advocacy support, independent service coordination and eductional workshops, we advance people's knowledge of resources and help them to build life-long advocacy skills. Our leadership development programs prepare individuals to help others as volunteer lay advocates, to influence policy, and to promote understanding and acceptance of people with disabilities.

The Children's Institute of Pittsburgh
With more than a century of experience, The Children's Institute of Pittsburgh is the leader in innovative and integrated health care, education, and social services for children and youth with special health care needs. We remain dedicated to improving the quality of life for children, young people and their families by providing a specialized continuum of services that enables them to reach their potential.

The Coalition Against Pediatric Pain: TCAPP was founded by families of children who are effected by chronic neuropathic pain disease. All of the founding families children suffer from RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome) and many suffer from multiple pain conditions, such as EDS (Hypermobility Syndrome), muscle spasms, migraines, abdominal migraines, and painful GI issues.

fightingagainstrsd is a website by teenagers who have CRPS.

Kids in Pain (UK) provides support and friendship to young people suffering from a chronic pain condition and their families.

Pain in infants, children, and adolescents: Resources for parents and professionals

Rock for RSD

RSD in Motion

RSD Hope Teens is an online support group for kids and teenagers suffering from CRPS.

RSD/CRPS Awareness in Teens Facebook Group

Woodsmall Law Group
Exceptional Lawyers for Exceptional Children. Our firm provides experienced, practical and sophisticated representation in matters related to the educational and community access rights of the child with special needs. The firm is committed to assisting families as they navigate the complexities of the special education system.

Wrightslaw
Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

 

Updated October 17, 2014

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