Could this be CVI? What to bring to the doctor
Ask the doctor out loud: could this be CVI, cerebral or cortical visual impairment? Bring a written list of what you see, a 30-second video, and your child's birth and medical history. There's no single test for CVI, so what you've noticed at home matters.
The question to ask
Say it out loud. Not every doctor knows CVI well, so name it.
“Could this be CVI, cerebral or cortical visual impairment? Her eyes look healthy, but she doesn’t seem to see the way she should.”
If the doctor isn’t sure:
“Can you refer us to an eye doctor who knows CVI?”
Who’s involved
- Pediatrician. Start here. Ask for a referral.
- Pediatric ophthalmologist. A medical eye doctor for kids. Checks the eyes first.
- Neuro-ophthalmologist or pediatric neurologist. Doctors for vision problems that come from the brain and nerves.
- Some optometrists and low vision specialists also diagnose CVI.
There’s no single test. The doctor will examine your child, ask about their history, and may order brain scans. Perkins School for the Blind keeps a CVI doctor directory by state at perkins.org. It’s a starting list, not an endorsement, so call first and ask: “How often do you see children with CVI?”
What to bring
- Your list of what you see. Use the log below. Short notes are fine.
- A 30-second video. Your child looking for a toy on a busy rug, then on a plain towel. Or walking up to a step. Or you walking into the room without a word, then saying hello.
- Birth history. Born early? Time in the NICU? Problems around birth?
- Medical history. Seizures, brain scans, neurology or genetics reports, other diagnoses.
- School or early intervention reports, if your child has any.
- Glasses, if your child wears them.
Call ahead and ask: “Can I send my notes and video before the visit?”
Signs to write down
The National Eye Institute says kids with CVI may have trouble:
- responding to the things they see
- seeing certain parts of what’s in front of them, like busy moving scenes
- recognizing faces and objects
- recognizing things in cluttered spaces
- reaching for something while they’re looking at it
- understanding what they’re looking at
Parents may also notice a child who reacts slowly to things they see, prefers to look at moving things, or looks with one part of their vision, like from the side. Some kids stare at lights. Others are bothered by light.
Before you leave the appointment
- “Do you think this is CVI? Can you write that in the visit notes?”
- “If it’s not CVI, what do you think it is, and what’s the next step?”
- “Who should we see next?”
- “Can you give me a letter with the diagnosis for early intervention or school?”
Observation log
Fill in a line whenever something happens. A week of notes tells a doctor more than a long story.
| Date and time | What happened | Where | How tired (1 to 5) | What was going on (noise, light, people) | What helped |
|---|---|---|---|---|---|
Example: Tue 5 pm. Walked past me at daycare pickup. Big room, lots of kids. Tired: 4. Found me when I said her name.
More signs, in plain words: Something is off: signs it could be CVI.
Common questions
- My child passed the eye exam. Should I still ask about CVI?
- Yes. CVI starts in the brain, so the eyes can look healthy. The National Eye Institute says that if an exam doesn't find eye problems that explain your child's symptoms, the problem might be with the brain.
- Which doctor diagnoses CVI?
- Often a pediatric ophthalmologist or a neuro-ophthalmologist. Perkins School for the Blind says a neurologist, an optometrist or a clinical low vision specialist can also make the diagnosis.
Sources
From cviexplained.com/doctor-visit/. General information for families and school staff. Not medical or legal advice. CVI is different for every child.