Resources

Below are resources for medical providers, patients and their families and caregivers and advocates interested in learning more about pediatric stroke and cerebrovascular disease.

Patients and Families

Patient Specific Resources

The Road to Recovery: Tips & Advice for Youth With Stroke

In a clinical research study examining lived experiences of survivors of pediatric stroke, participants were asked what advice they would have for a peer newly diagnosed with stroke. A selection of their insightful responses was compiled into a handout which you can access here. We hope these encouraging words about adjusting to life after pediatric stroke are helpful to families who have recently gone through this experience. If you are interested in reading the published study, it is available in open access here.

Source: Champigny, C.M., Feldman, S.J., Westmacott, R., Wojtowicz, M., Aurin, C., Dlamini, N., Dirks, P., & Desrocher, M. (2023). Adjusting to life after pediatric stroke: A qualitative study. Developmental Medicine & Child Neurology, 65(10), 1357-1365. https://doi.org/10.1111/dmcn.15556

With the help of IPSO members, the authors of the Road to Recovery: Tips & Advice for Youth with Stroke have also translated the handout into other languages. Please contact IPSO if you would like to help with the translation of the handout into your language.

Arabic – Tips & Advice for Youth With Stroke | عربي:
تادﺎﺷرإو ﺢﺋﺎﺼﻧ :ﻲﻓﺎﻌﺘﻟا ﱃإ ﻖﻳﺮﻄﻟا ﺔﻴﻏﺎﻣﺪﻟا ﺔﺘﻜﺴﻟﺎﺑ ﻦﻴﺑﺎﺼﻤﻟا بﺎﺒﺸﻠﻟ

Bahasa Indonesia – Tips & Advice for Youth With Stroke | Bahasa Indonesia: Nasehat & Saran Untuk Anak Muda Yang Mengalami Stroke

French – Tips & Advice for Youth With Stroke | Français: Conseils Pour Les Jeunes Survivants d’AVCe

Polish – Tips & Advice for Youth With Stroke | Polski: wskazówki i rady dla młodych po udarze

Spanish – Tips & Advice for Youth With Stroke | Español: consejos y sugerencias para jóvenes con accidente cerebrovascular

Hindi- Tips & Advice for Youth with Stroke | हिंदी: स्ट्रोक (पक्षाघात) से आरोग्य प्राप्ति के मार्ग पर- बच्चों एवं किशोरों को युक्तियाँ एवं सलाह

Ukrainian – Tips & Advice for Youth With Stroke | Yкраїнська: Шлях до одужання: Поради та рекомендації для молоді, яка перенесла інсульт

Mandarin– Tips & Advice for Youth With Stroke | 康复之路:给中风青少年的提 示和建议

Russian: Tips & Advice for Youth With Stroke | На пути к выздоровлению:
рекомендации для детей и подростков, перенесших инсульт

Back to School Resources

Australia:

Your Child’s IEP – Guide for Families on Personalised Plans for Learning and Support – Australian Alliance for Inclusive Education
Students with disabilities – Australian Government Department of Education

Canada:

Navigating the World of Special Education – Canadian Pediatric Stroke Support Association
Understanding Education Rights in Canada – AIDE Canada

Germany: 

Rehakliniken-Kindlicher-Schlaganfall

Spain:

Guías – Asociacion de Hemiparesia Infantil “Hemiweb”

Switzerland: 

Schweizer Paraplegiker-Zentrum Nottwil

United Kingdom:

Returning to School after Stroke – Stroke Association

United States:

Education – Children’s Hemiplegia and Stroke Association

BrainSTEPs: An example of a successful school re-entry program for children with brain injury is which is available in Pennsylvania and Colorado.

Pediatric Stroke Family Tool Kit

AVM Alliance

Website: www.avmalliance.org
AVM Alliance Story
AVM Alliance Video Library

Child Neurology Foundation

Perinatal/infant Stroke
Childhood Stroke

International Alliance for Pediatric Stroke

Website: www.iapediatricstroke.org
Pediatric Stroke Family Tool Kit

Pediatric Stroke Family Tool Kit- PDF

VOGM Support Network

Website: https://vogm.org/
About VOGM Support Network PDF

Family Guides

Australian’s Family Guide to Pediatric Stroke
Canada’s Family Guide to Pediatric Stroke
United Kingdom Pediatric Stroke Guidance

Podcasts

JCN: NICU series Prenatal Brain Hemorrhage
Dr. 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.
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.
Stroke in Children Podcast: Dr. Heather Fullerton, a pediatric neurologist at UCSF, discusses stroke in children, the causes and path to recovery with Bill Monroe on StrokeCast.
JCN: Pediatric Stroke Podcast: Dr. Alison Christy interviews Dr. Sarah Lee from Stanford Children’s Health and Dr. Gabrielle deVeber from Hospital for Sick Children about their publication, Moyamoya Disease in Children: Results from the International Pediatric Stroke Study. She also interviews Dr. Lisa Sun from John Hopkins All Children’s Hospital.
Stroke Can Happen At Any Age Video Series: The International Alliance for Pediatric Stroke partnered with the American Heart Association/American Stroke Association to produce videos to help raise awareness of perinatal and pediatric strokes.
The Doctor is IN: Brain Vessels, MRI, & CTs Explained: Raylene Lewis, President of the AVM Alliance. and Dr. Stuart Fraser, pediatric neurologist and IPSO member, discuss medical terms parents read on radiology reports, different radiology tests ordered by doctor’s and major vessels in the brain.
Against the Odds: AVM Brain bleed survivors, Kyler Lewis and Ashley Lindsay, talk about what it is like to deal with a brain vessel disease.

Video Resources

Pediatric Stroke Education Series: The Pediatric Stroke Advisory Council at Massachusetts General Hospital and Spaulding Rehabilitation Hospital in partnership with the Young Genetic Stroke Alliance and the International Alliance for Pediatric Stroke hosts monthly educational events to support families with children who have had a pediatric stroke or brain injury. Checkout their website for more information on how to register for upcoming events and watch recordings of past events.

Paediatric Stroke Aware the World: The International Pediatric Stroke Study has created a video entitled Paediatric Stroke: A View Around the World, to highlight inspiring paediatric stroke research being conducted around the world. The researchers in the video share a common goal: to continue to improve the care provided to paediatric stroke patients and their families. The COVID-19 pandemic has certainly reminded us all that we are part of a global village, and we are stronger together.