After a Stroke: Resources

In honor of World Stroke Day 2018, we want to provide helpful resources and information for getting up again after a pediatric stroke and finding your new normal. Not only for the pediatric stroke child, but the entire family as well. If you have experienced pediatric stroke in your family, you know that everyone in the family is impacted. It’s important to find good healthcare providers who specialize in pediatric stroke. However, it is equally beneficial to connect with other families, either online or locally. Just knowing you are not alone can make a difference in your ability to get #UpAgainAfterStroke.

We encourage you to increase your knowledge about pediatric stroke and take a moment to explore some of these valuable resources! We will be adding listings throughout October, so please let us know if there is an entry you feel should be included. Email us at info@iapediatricstroke.org


Organizations, Local and Online

The International Alliance for Pediatric Stroke has compiled a list of many of the pediatric stroke local and online organizations from around the world. There may be one in your area! If you have an organization that you would like included, please let us know at info@iapediatricstroke.org.


KISS Pediatric Stroke Support

This safe and welcoming Pediatric Support Facebook group is for parents and caregivers impacted by perinatal or childhood stroke. It is private so you need to send a request to join.


Child Neurology Foundation
Family Support & Empowerment Program (FSEP)

The Family Support & Empowerment Program offers families a direct connection with an experienced, compassionate Peer Support Specialist to help navigate the journey of disease diagnosis, treatment, and management for a child living with a neurologic condition. FSEP’s Peer Support Specialists are trained to listen to you along this emotional journey without judgment. Each Peer Support Specialist receives comprehensive training about the needs of the child neurology community and ongoing mentorship as they start connecting with families. Along with offering relational support, Peer Support Specialists seek to empower families by sharing sound information and helpful resources.


Pediatric Stroke Warrior Family Tool Kit

The Pediatric Stroke Warriors Family Toolkit is intended to give families guidance on how to navigate this journey after their child has suffered a stroke. This toolkit has been made accessible online to download, however, hard copies are available at no charge for individuals, physicians and hospitals. The information is applicable to both impacted families and medical professionals. It is intended to give guidance on how to navigate the journey after a child has suffered a stroke.

Please contact Pediatric Stroke Warriors at support@pediatricstrokewarriors.org for more

information.

 


Pediatric Stroke Warrior Brave Boxes and Warrior Bags

Early Outreach through the Warrior Bag and Brave Box program provides a starting point for families, and a gift of hope to a child. Nationwide in the U.S., they distribute hundreds of Bags & Boxes each year to newly diagnosed families and children of all ages recovering from stroke.


Pediatric Stroke Patient and Family Guide, Pediatric Stroke Brochure

The Pediatric Stroke Patient and Family Guide and Pediatric Stroke Brochure were designed to provide basic information for patients, caregivers and the medical community on pediatric stroke. They were funded through a grant from the North Carolina Stroke Care Collaborative.

 

 


Carolina Acute Stroke Training (CAST)

The Carolina Acute Stroke Training (CAST) program was developed by the UNC Stroke Team under the leadership of Susan Wilson RN, MSN, C-ANP. Learners for CAST include registered nurses, first responders, pharmacists, allied health professionals, and a wide variety of persons with different backgrounds, education and experience. CAST has a Pediatric Stroke Module (Module 9) with a lot of information that some parents will also find helpful.


Childhood Stroke Resources and Toolkit

This newly published comprehensive website contains childhood stroke resources, information, a practical guide for teachers and healthcare professionals and much more. From The Stroke Association, the UKs leading charity dedicated to conquering stroke.

 


The Diagnosis and Acute Management of Childhood Stroke, Clinical Guideline 2017

This clinical guideline was developed in response to the needs of professionals and families for a consistent approach to childhood stroke in Australia. It includes more than 60 recommendations to help emergency staff and paediatricians in

diagnosing and managing children with stroke upon arrival to hospital.

The guideline was developed by the Australian Childhood Stroke Advisory Committee (ACSAC), comprising Australia’s leading clinical experts, scientists and guideline developers, representing all of Australia’s leading tertiary paediatric centres.


International Pediatric Stroke Study

The International Pediatric Stroke Study (IPSS) performs collaborative research aimed at understanding, preventing and improving outcomes in pediatric stroke, and to promote professional education, support families with pediatric stroke members, and support public education.

The IPSS currently includes over 150 participating research staff, investigators and collaborators from 55 active centers that have enrolled over 5600 children with stroke. Establishing this network has led to successful competitions for millions of dollars in research grants to fund the execution of the multicenter research studies and clinical trials required to advance knowledge and improve outcomes.

Please see the list of International Pediatric Stroke Study Colleagues and Collaborators to find one near you.


Pediatric Stroke Rehabilitation: An Interprofessional and Collaborative Approach

The book is designed to enhance the practice of all health care providers, enrich discussion, and emphasize the interdisciplinary nature of managing best outcomes for a child who has had a stroke. Evidence-based practice is threaded throughout the text with an emphasis on recovery vs. compensation, goal achievement, and outcome measurement. (include a picture of the cover of the book)

Parents, caregivers and family members of children who have had a stroke will also find this book to be a valuable resource. The publishers, SLACK Inc., have agreed to offer a discount to families who would like to purchase the book. Here are the details:

URL: www.healio.com/books/pedstroke 

Promo Code: PSR17

The promo code will take 20% off the retail price. The promo code is only valid on the healio website or by calling the customer service department at 1-800-257-8290.


The “Mirrorable” Project

Francesca Fedeli, founder of Fight the Stroke and an International Alliance for Pediatric Stroke board member along with her husband Roberto D’Angelo have been working with scientists, researchers and physicians on development of the “Mirrorable” Project. Mirrorable (patent pending) is an interactive platform that allows a new model of rehabilitation therapy at home, specially designed to meet the needs of children who have suffered brain damage at a very early stage of their lives, with motor level impacts. The scientific principle on which it is based is the ability to stimulate the plasticity of the motor system by activating the mechanism of mirror neurons, just watching the video-stories and exercising with other children with similar needs. You can get more information about this promising rehabilitation therapy on the Frequently Asked Questions page.


American Heart Association Support Network

The American Heart Association hosts a support network forum for multiple conditions. Pediatric Stroke is one of them. They also offer the opportunity to ask a doctor a question about the condition. You have to create a profile and can sign up to receive notices if someone has posted in your forum.

BOOKS

Lotta e sorridi (Smile and Keep up the Fight)

A story about love and science by Francesca Fedeli.
The moving story of two parents faced with what parents fear the most — their child’s illness — and turning it into an amazing opportunity. The book is written in Italian, but the English excerpt can be found here. The book is available on Amazon.

The Little Dark Spot: How I Came to Terms with My Baby’s Stroke

This book tells the story of how a mother drew inspiration from her childhood heroes and applied seemingly unrelated life experiences, like working as a flight attendant and learning to play the piano, to helping her daughter overcome the effects of a childhood stroke. And, within the struggles, how she ultimately found a sense of healing, realizing that even the most difficult situations can eventually bring something positive. To read an excerpt, click here. Available internationally through Amazon.ca.

Mimi Learns to Walk

The “Mimi” Books are based on a mother’s own experience helping her daughter. They feature a young girl who is just like everyone else except that as a baby, she suffered a stroke. For children facing the challenges of physical rehabilitation, the stories show children how someone much like themselves deals with the kinds of challenges they are likely to face in the early years of their lives. Read more about the book here.
“Mimi Learns to Walk” is the first book of the series.
Available internationally through Amazon.ca in English. Also available in French through Amazon.ca.

Daniel’s New Friend

A new generation of children love Daniel Tiger’s Neighborhood, inspired by the classic series Mister Rogers’ Neighborhood. This delightful story is perfect for helping little ones understand that despite small differences, anyone can become a new friend. This is also available as a video, Daniel’s New Friend, episode #133 of the Daniel Tiger’s Neighborhood.