Video
Understanding CVI in kids with epilepsy and complex needs
A video series with DEE-P Connections about CVI in kids with complex needs and the overlap between CVI and developmental epilepsies.
Did you know that the leading cause of childhood blindness and low vision, CVI, commonly occurs alongside epilepsy?
If not, you’re not alone. An estimated 64% of kids with CVI also have epilepsy. While CVI, or Cerebral/Cortical Visual Impairment, is incredibly common, it’s also alarmingly underdiagnosed and misunderstood. In fact, most of the 65 million people who live with epilepsy worldwide haven’t even heard about CVI.
That’s why our incredible collaborators at DEE-P Connections are helping us spread CVI awareness and reach communities where CVI commonly co-occurs. Together, we’re putting CVI on the map to increase early diagnoses and improve outcomes for every child with CVI.
I am really excited about the partnership between DEE-P and CVI Now because I have seen how hard it is for families to know that CVI exists, get a diagnosis, and get access to the right services. This is a partnership that really is going to help open some doors for families.
-Gabi Conecker, MPH
President and Co-founder of the International SCN8A Alliance,
DEE-P Connections and The Inchstones Project
How do CVI and epilepsy interact?
CVI and epilepsy are both brain-based disorders. With CVI and epilepsy, we’re seeing overlapping causes and associated conditions. There is a wide range of genetic epilepsies, such as Angelman Syndrome, Rett Syndrome, cyclin-dependent kinase-like 5 deficiency disorder (CDKL5), and SCN8A as well as structural causes of epilepsy such as focal cortical dysplasia, traumatic brain injury (TBI), perinatal brain injury, and polymicrogyria. Additionally, conditions such as Lennox-Gastaut Syndrome (LGS), Dravet Syndrome, and Infantile Spasms are important when considering CVI.
Scroll through our collaborative video series with DEE-P Connections to learn more about CVI in kids with complex needs and the overlap between CVI and developmental epilepsies. Topics include an introduction to CVI, the CVI visual behaviors, compensatory skills, diagnosis, assessment and intervention, and advocacy. We will post new videos periodically, so check back often!
What is CVI?
Download the video transcript to What is CVI?
Learn more about CVI and epilepsy.
Could it be CVI?
Download the video transcript for Could it be CVI?
Learn more about when to suspect CVI and explore our growing Perkins CVI Doctory Directory.
Dive into the CVI visual behaviors
Download the video transcript to CVI visual behaviors.
Learn more about the CVI visual behaviors and The Perkins CVI Protocol.
Observing compensatory skills in your child with CVI
Download the video transcript to Compensatory Skills and CVI.
Learn more about compensatory access to learning for students with CVI.
How is CVI diagnosed?
Download the video transcript to Diagnosing CVI.
Learn more about how CVI is diagnosed and find a doctor who can evaluate for CVI.
Next steps after a CVI diagnosis
Download the video transcript to Next Steps After a CVI Diagnosis.
Learn more what to do after a CVI diagnosis and learn about CVI assessments.
General supports to try for your child with CVI
Download the video transcript to General Supports for CVI.
Learn more about examples of CVI accommodations, ways to prepare your home for early intervention, and how to DIY for CVI accessibility in your home.
Advocating for your child with CVI
Download the video transcript to advocating for your child with CVI.
Build your knowledge and advocacy skills with our CVI Now Early Intervention series and CVI Now IEP Guide.
More from CVI Now:
- Lean in. Sign up for a 1:1 CVI Parent/Caregiver Support call and find CVI community support on Facebook at CVI Now Parents.
- Explore our resources on the CVI visual behaviors, communication, learning, and at-home strategies that can help your child access their world.
- Read stories from other CVI families and individuals with CVI.
- Stay in the know. Subscribe to our newsletter and follow us on Instagram.
More from DEE-P Connections:
- Go to DEE-P’s home page to find information about living with DEE, seizure management, and non-seizure challenges.
- Explore resources about medical, care, and research at DEE-P’s Resource Center.
- Watch webinars on topics related to living with DEEs.
- Join DEE-P’s mailing list.
