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Epilepsy and CVI explained
CVI is common in children with epilepsy. Learn how seizures affect the brain, why CVI can occur with epilepsy, and find your next diagnostic steps.
Did you know that an estimated 64–78% of kids with CVI also have epilepsy? There’s lots of overlap—which means there’s a lot to sift through. We can help. Here’s information about CVI, epilepsy, and how they interact.
What is CVI?
Cerebral/Cortical Visual Impairment (CVI) is a lifelong, brain-based visual impairment. With CVI, there’s damage to the visual pathways or visual processing areas of the brain.
This means that CVI is a neurological issue. It’s often caused by complications from premature birth, pediatric stroke, and genetic conditions. Another common cause of CVI is oxygen deprivation, which contributes to such a large overlap among children with epilepsy and CVI. Epileptic seizures in infants often accompany perinatal hypoxic ischemia (when the brain doesn’t receive enough blood flow or oxygen).
Some people with CVI have healthy eyes, but they have trouble processing what those healthy eyes can see. In particular, they have difficulty with visual attention and recognition. CVI can co-occur with other eye conditions.
At first, you might notice that your child displays:
- trouble with direct eye contact and social gaze
- difficulty navigating their surroundings
- trouble sorting through clutter
- fatigue, especially with lots of stimuli
- inconsistent responses to stimuli
Learn more about the common CVI visual behaviors.
What is epilepsy?
Epilepsy is more well-known than CVI. It’s also a brain condition, and it’s often caused by birth complications and genetic conditions. Groups of nerve cells (neurons) in the brain cause seizures when they send the wrong electrical and chemical signals.
Here are some common symptoms of epilepsy:
- Temporary confusion
- Loss of muscle control
- Repeated, rhythmic jerking or twitches
- A staring spell
- Stiff muscles
- Loss of awareness and consciousness
Some people recover from a seizure right away. Sometimes, it takes minutes or even hours, with lingering confusion and sleepiness. About 1 in 26 people develop epilepsy in their lifetime. Learn more about epilepsy.
Diagnosing CVI and epilepsy
Less than 20% of kids with CVI are correctly diagnosed. Why? Diagnosing CVI is complex. There aren’t any clinical tests to “see” CVI on scans or at a doctor’s office. And because so many kids have CVI with overlapping conditions, diagnosis is even harder.
Typically, kids with CVI receive a diagnosis through a combination of evaluation and assessment. Learn how CVI is diagnosed.
Epilepsy has many diagnostic steps. Tests might include:
- Blood tests for signs of infection or genetic conditions
- Neurological exams to test mental function, movement, and behavior
- Electroencephalogram (EEG), to record the brain’s electrical activity
- CT scans, to detect tumors, cysts, or brain bleeds
- Magnetic resonance imaging (MRI), to examine the brain’s structure in detail.
If your child has epilepsy, it’s important to know that they might also have CVI. Learn more about CVI prevalence and how to spread the word.
When Weston was younger, he was having very frequent seizures. Each time Weston had a seizure, he would be in a daze, and then he’d sleep for hours. Seizures affected his CVI so much, and in turn, it affected his ability to access his world.
– Ali Mahady,
CVI mom to Weston
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.
In some cases, CVI and epilepsy are caused by traumatic brain injury (TBI). About 1 in 50 people with TBI will develop post-traumatic epilepsy, marked by recurrent seizures. Older people have a harder time recovering from TBI than younger people. Learn more about how the brain develops with CVI.
Additionally, both epilepsy and anti-epileptic medications, which can cause drowsiness, mood changes, and other symptoms, can affect how CVI manifests. For example, both conditions affect sensory integration. This refers to how we process, integrate, and organize sensory information, both from our bodies and also from the outside environment. It can be hard to use vision while also balancing touch, sound, gross or fine motor activities, and internal stimuli throughout the day. That’s why people with CVI, and with epilepsy, can be more sensitive to, or avoidant of, sensory stimulation. Learn more about sensory integration and its impact on vision.
Savannah has a severe and rare form of epilepsy known as LGS. She has always relied heavily on her compensatory skills to understand the world around her. Her seizures constantly impact her availability to learn, and having CVI only makes it more difficult for her.
– Lacey Smith,
TVI, CVI mom to Savannah
Tune into our video series on CVI in kids with genetic epilepsies and complex needs.
How to take action
If you suspect your child has CVI along with epilepsy, there are many resources and lots of hope. Visit our When to Suspect CVI guide for a roadmap of action, from common symptoms to medical resources to advocacy at school.
Is your child already diagnosed with CVI? Here’s what to do next.
Living with CVI and epilepsy
Perkins is a community hub for families with CVI, including those with epilepsy. Everyone with CVI is unique. But each story weaves common threads that inspire and educate. Remember: You’re not alone, and there’s so much hope.
Every child is so unique, and they have so much to teach us about life. Always see the ability.
– Lacey Smith,
TVI, mom to Savannah
CVI Now teamed up with the Epilepsy Foundation for a panel presentation about the CVI and Epilepsy connection.
We’re here for you.
Caregiving is overwhelming. We’re always here with 1:1 CVI Parent Support. These 30-minute video calls provide emotional support and logistical resources. Sign up for a session.
