Parents & Family

Parents and families will benefit from resources which includes: guides & guidelines, videos & podcasts, recognizing strokes in children, caregiving, coping, books for parents, and books for children.

Guides & Guidelines

Pediatric Stroke Family Tool Kit
Updated in 2022. Please check out our guidebook for anyone who knows a baby, child, or teen who has had a stroke. It’s a must-have tool kit for your journey after stroke!

Pediatric Stroke Tool Kit, Only in Italian, 2023
Our colleagues from FightTheStroke have created an Infant and Childhood Stroke Tool Kit in Italian based on our IAPS English version. The Tool Kit is available online at no cost. Printed versions will be available to purchase in the future. This beautifully done guide is sponsored by AINCP.

Care Pathways on the Rehabilitation of Children with Cerebral Palsy, Only in Italian, 2023
Guidelines created in Italian in collaboration with the scientific companies Simfer and Sinpia.

Improving Pediatric Stroke Diagnosis: Filling the Gaps
Summary of the American Heart Association’s scientific statement, Neurology Advisor, 2019

Our Family’s Stroke Journey, 2020
Downloadable family guide from Australia which addresses:
What is a stroke? How can stroke affect my child? What treatment and care will my child receive? What do I need to know about life after my child’s stroke? What help is available?

Pediatric Stroke Patient and Family Guide, 2015
Produced by the Departments of Neurology and Neurosurgery at the UNC Medical Center, IAPS, and others, this booklet provides basic information for patients and caregivers on pediatric stroke. This book was funded through a grant from the NC Stroke Care Collaborative.

Pediatric Stroke Brochure, 2015
Produced by the Departments of Neurology and Neurosurgery at the UNC Medical Center, IAPS , and others. This brochure highlights the signs and symptoms of pediatric and childhood stroke, along with steps to take for both types. Paid for by a grant from the NC Stroke Care Collaborative

A Family Guide to Pediatric Stroke, 2011
This guide was published through Canadian Stroke Best Practices/Heart and Stroke Foundation of Canada and is designed to provide basic information about stroke and stroke care to families of children who have had a stroke.

Childhood Stroke Resources, 2018
From The Stroke Association in the UK, this website includes: Childhood Stroke Information, an expansive Toolkit Information Guide, and Resources to support young people, families and professionals. Applicable for other countries.

2017 Stroke Report, 2017
The Canadian Heart & Stroke 2017 Stroke Report looks at the stroke recovery journey across the ages, highlighting common challenges and issues that occur at specific life stages: babies and children, younger adults and older adults. The childhood stroke section begins on page 6.

Canadian Stroke Best Practices, specific to pediatric stroke, 2015
Canadian Stroke Best Practices provides the “Best Practice Guideline” development and implementation. They aim to offer quality improvement of stroke care.

Videos & Podcasts

Perinatal Stroke: Diagnosis & Management – American Academy of Neurology, December 2023
From the American Academy of Neurology, a NeuroByte learning video. Perinatal stroke may present in infants or older children and often has long-term effects on neurodevelopment into adulthood. Early identification and management of perinatal stroke are crucial to optimize outcomes across the lifespan. This video defines perinatal stroke, describes its common signs and symptoms, and provides an overview of its management to facilitate timely identification and management of patients with perinatal stroke. 

Stroke Awareness Month, May 2023
During Stroke Awareness Month in May 2023, we posted tips, tricks, and life hacks from pediatric stroke warriors and their parents. We received some amazing, helpful information from our pediatric stroke community! Please see our YouTube channel for more helpful videos. 

A Stroke Can Happen at Any Age video series, 2014
The International Alliance for Pediatric Stroke, in partnership with the American Heart Association/American Stroke Association produced these videos to help raise awareness that a stroke can happen to infants, children teens, and even before birth. Appropriate for parents groups and medical conferences. Please see our YouTube channel for more videos from the pediatric stroke community!

Pediatric Stroke Education Series
These educational events are run by the Pediatric Stroke Advisory Council at Massachusetts General Hospital and Spaulding Rehabilitation Hospital and in partnership with Young Genetic Stroke Alliance and International Alliance for Pediatric Stroke. They partner with families and speakers from around the world. There is no charge to join a session, but you must register. Past sessions are available to watch on their YouTube channel.

It’s Not Your Fault, 2018
Many families (especially mothers) experience feelings of guilt after their baby is diagnosed with perinatal stroke (stroke before or around the time of birth). This educational video from the University of Calgary helps explain why “It’s Not Your Fault”. 

AVM Alliance: A Pediatric Stroke Podcast
A pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid’s side of brain injury with honest talk, news, information and discussion for our community.

Podcasts from SAGE Neuroscience and Neurology/Journal of Child Neurology
JCN: Transcranial Magnetic Stimulation— Dr. Aliya Frederick interviews Dr. Bernard Chang and Dr. Steve Wu about transcranial magnetic stimulation, a non-invasive method of brain stimulation.
JCN: Pediatric Stroke
— Dr. Alison Christy interviews Dr. Sarah Lee from Stanford and Dr. Gabrielle deVeber from Sick Kids in Toronto about their article, Moyamoya Disease in Children: Results From the International Pediatric Stroke Study. She also interviews Dr. Lisa Sun from Johns Hopkins University.
JCN: What Your Pediatric Neurologist Wants You to Know: Neonatal Neurology — JCN’s Residents and Fellows Board Director, Dr. Alison Christy, interviews Dr. Sonika Agarwal, a neonatal neurologist from Children’s Hospital in Philadelphia.
JCN: NICU Series: Prenatal brain hemorrhageDr. Sonika Agarwal of Children’s Hospital of Philadelphia talks about prenatal brain hemorrhage.
JCN: Interview with Mary Kay Ballasiotes, pediatric stroke advocate — Dr. Sonika Agarwal of Children’s Hospital of Philadelphia interviews Mary Kay Ballasiotes, pediatric stroke advocate and parent of a child with cerebral palsy from a stroke at birth. Mary Kay is also the Executive Director of International Alliance for Pediatric Stroke.
JCN: NICU Series: Interview with a Parent and the Brain Recovery Project: Childhood Epilepsy FoundationDr. Sonika Agarwal of Children’s Hospital of Philadelphia talks to Audrey Vernick about her experience with pediatric epilepsy from a parent’s perspective. Audrey also discusses Infantile Spasms and Hemispherectomy. Brain Recovery Project: Childhood Epilepsy Foundation

Tips and Tricks for Kids with Hemiplegia
Michelle, a perinatal stroke survivor, shares some tips and tricks she has learned for living with hemiplegia. Thank you to our friends at Fight the Stroke for compiling these segments into one video!

Stroke in Children Podcast, 2019
Dr. Heather Fullerton, a pediatric vascular neurologist at UCSF, discusses stroke in children, the causes, and the generally optimistic recovery path with Bill Monroe on StrokeCast.

In Our Baby’s Illness, 2013
In this TED Talk, Roberto D’Angelo and Francesca Fedeli talk about their son Mario’s perinatal stroke and mirror neuron rehabilitation during a TEDGlobal talk in 2013.

Recognizing Strokes in Children

Kids and Strokes – Are They Little Adults After All?
Article written by Dr. Peter Antevy, innovator of the Handtevy Pediatric Resuscitation System, who is a nationally recognized lecturer and expert in the field of pre-hospital pediatrics.

Stroke: not just an adult’s condition
Overview of signs, symptoms, risk factors, treatment and delay in diagnosis from Medical News Today, 2015

Common infections linked to stroke in children; Vaccines may reduce risk
From the American Stroke Association’s International Stroke Conference, 2014

This World Stroke Day, Know That Kids and Teens Can Be Stricken, Too — Like Vandna
Written by AHA CEO Nancy Brown for the Huffington Post, 2014

Caregiving

Pediatric Exams: Stroke in Children, 2015
In this video, Dr. Rebecca Ichord of Children’s Hospital of Philadelphia, explains the signs and symptoms of pediatric stroke and demonstrates an exam.

Coping

Parents experience post-traumatic stress disorder after child’s stroke
Research study from Boston’s Children’s hospital. Parents of children who had suffered a stroke showed signs of PTSD while children showed signs of anxiety. Published in 2015

Parent and family impact of raising a child with perinatal stroke
Although most mothers of children with perinatal stroke adapt well, mothers of children with moderate/severe conditions appear to be at higher risk for psychological concerns. Published in BMC, 2014

Depression in Parents of Children With Developmental Disabilities: What Do We Know and What Can We Do?
Helping parents feel more capable and effective in caring for their child with special needs may reduce the risk of depression. From Children’s Hospital of Philadelphia, 2018.

Books for Parents

The Hemiplegia Handbook, 2012
This book, published through HemiHelp in the U.K., is a detailed overview of hemiplegia covering a wide range of aspects from its causes to information on how to support a child affected by hemiplegia. Practically oriented, the Hemiplegia Handbook aims to be a useful guide for both parents and professionals. It costs £5.00 to ship outside of the UK in Europe and £10.00 to ship to countries outside of Europe. For international purchases please contact the office before making your order 0845 120 3713 or email kate@hemihelp.org.uk.

Seizures and Epilepsy in Childhood: A Guide (A Johns Hopkins Press Health Book) 3rd Edition, 2003
“This remarkable book has been empowering parents with vital information for more than ten years, and the new edition promises to do the same. It is committed to making parents active partners in their children’s care and will be a vital resource for families everywhere.” (Eric R. Hargis, President and CEO, Epilepsy Foundation)

The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, 2015
This book tells the story of how a mother drew inspiration from her childhood heroes and applied seemingly unrelated life experiences, helped her daughter overcome the effects of a childhood stroke.

Lotta e sorridi (Smile and Keep up the Fight), 2015
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. The English excerpt can be found here.

Books for Children

Or So They Thought! A True Story, 2023
Written by a young stroke survivor, Marina Ganetsky, every line is straight from the trenches of real life; the young author refusing to shy away from uncomfortable truths. In the mini-memoirs that follow, other young stroke survivors fearlessly share their personal journeys.

This Girl’s Got Grit, 2020
A story about cerebral palsy and acceptance. The author, Felicia Flewelling is Frankie’s mom. This book was born out of her journals, blog, and her participation in a cerebral palsy support group. She and her husband, Mark, hope this book will help others feel less lonely and more empowered.

Daniel’s New Friend, 2015
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.

I See You, Little Naomi, 2014
Meet Naomi and get to know about her unique life because of a boo-boo that others can’t see. A survivor of pediatric stroke, her story will introduce children to the world of special needs and that it’s okay to be curious about others who may look or act differently.

Mimi Learns to Walk, 2014
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. Also available in French.