Resources and Links
ISOP Resources
A booklet by Min H. Mehta, M.D., FRCS
The Good News and the Hard News
From the Journal Of Bone and Joint Surgery: A study of 136 children with progressive infantile scoliosis treated under the age of four years, and followed up for nine years, shows that the scoliosis can be reversed by harnessing the vigorous growth of the infant with serial corrective plaster jackets (Mehta Growth Guidance Casting).
Learn the ins and outs of cast care and good hygiene.
Since their organs, lungs and spine are working overtime, your child’s body is burning extra calories at all times.Ideas from parents to bolster their weight.
Techniques and tips from parents who have been there for diapering a child in a cast.
One portfolio of all related medical records can be a real lifesaver
The effects of scoliosis on the entire body.
This intensive procedure can reduce the degree of curvature in cases of severe idiopathic or congenital scoliosis.
Radiation Exposure and the Treatment of Infantile Scoliosis
Information from The Scoliosis Association of the U.K.
A glossary of terms and definitions pertaining to Infantile Scoliosis.
Prepare for you child’s first visit to the Orthopedic Surgeon. Download this list of important questions.
ISOP offers this simple guide to scoliosis screening for pediatricians and parents.
This handbook is a compilation of personal experiences and stories from several ISOP constituent parents whose children underwent various typed of distraction rod, implant surgeries.
In the News
Progressive Infantile Scoliosis: Where Surgery Was The Standard, Casting May Be The Future
Casting Returns as Treatment Option for Idiopathic Infantile Scoliosis
Casting May Trump Surgery for Infantile Scoliosis Infantile Scoliosis
Early Treatment Process Crooked Love: The Story of a Boy and the Mom who Fought to Save Him
External Blogs
The Infantile Scoliosis Chronicles
C is for Crooked
Girl to Mom
Infantile Scoliosis – J’s diary
One Day at a Time
Sticks and Stones: A progressive infantile scoliosis story
Jack’s Curvy Journey
Our Petit Sweet Pea
Our Journey through Progressive Infantile Scoliosis
Kaity’s Journey
Our Curving Road
Journeys with Jax and Oliver
Strength of Spirit
Maria Talks Back
Savanna’s Story
Noel Industries: Noel EDF Casting Frames
Noel Industries is now able to provide cost effective, durable, stainless steel casting frames with multiple special features to physicians wanting to practice the Gold Standard of Care to their young patient’s affected by Progressive Infantile Scoliosis. Noel Industries will donate $250 of every frame sold back to ISOP.
http://www.noeledfcastframe.com
Related Disorders
Arthrogryposis Multiplex Congenita (AMC):
Group seeks to provide and encourage more understanding and mutual support between those diagnosed. Group also seeks to create a higher standard of AMC awareness via conventions, meetings, and studies.
http://www.amcsupport.org
Chiari Malformation and Syringomyelia:
The American Syringomyelia Alliance Project, Inc. (ASAP) is a non-profit, 501(c)(3), member supported organization, a nationwide clearinghouse for information regarding Chiari (CM) and syringomyelia (SM) and related disorders.
http://www.asap.org
Ehler’s-Danlos:
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos Syndrome by creating and distributing accurate information, providing a network of support and communication, and fostering and funding reseach.
http://www.ehlers-danlos.com
Jeune’s Syndrome:
Madison’s Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication among parents, physicians and medical experts.
http://www.madisonsfoundation.org
Marfan’s Syndrome:
The National Marfan Foundation is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders.
http://www.marfan.org
Neurofibromatosis:
The Children’s Tumor Foundation. is a non-profit 501(c)(3) medical foundation, dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF).
https://www.ctf.org
Prader-Willi Syndrome Association (USA):
PWSA(USA) is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those impacted by Prader-Willi syndrome.
http://www.pwsausa.org
Local Colorado Resource
Blue Star Connection
Connecting children with all types of challenges to music and musical instruments.
www.bluestarconnection.org
CARE Partner
Lynx Collaborative Care Network:
Through the Lynx Collaborative Care Network, our participants and their families utilize the services of medical experts including Physician and Nurse Consultants, Researchers, and key resources from across the country and abroad. Because Lynxcare services are individualized, we are able to spend whatever time is required with the participant.
http://lynxcare.net/
