How to better advocate for your CVI child and get a diagnosis: Advice from Dr. Barry Kran

Come prepared · Don’t blame yourself · Be a diplomatic nudge · Lean on your CVI community · Approach appointments from a place of strength

Isaiah points to a board that Dr Kran holds in front of him

Every CVI parent will tell you: Obtaining a diagnosis is a journey. The good news is, we’re with you! The CVI community is wise and supportive, with resources and recommendations.

Meanwhile, the cortical/cerebral visual impairment (CVI) diagnosis is being constantly refined. One of the medical leaders leading the charge is Barry Kran, OD, FAOO, Professor at the New England College of Optometry and Optometric Director, NECO Center for Eye Care at Perkins. We talked to him about how families should seek medical care once they suspect vision problems.

Arm yourself with information.

CVI presents differently in each child. But there are some common facts:

  1. It’s the most common cause of blindness and low vision in children, and it’s the leading cause of congenital blindness (vision loss at birth) in the United States. You’re not alone.
  2. The latest research shows that up to 1 in 30 kids have CVI-related visual difficulties.
  3. CVI is common in neurodevelopmental conditions, and complications from premature birth, lack of oxygen, pediatric stroke, and genetic conditions are common causes of CVI.
  4. Up to 70 percent of kids with cerebral palsy and one study shows an estimated 38 percent of participants with Down Syndrome have suspected CVI.
  5. CVI causes children with healthy eyes to have difficulty processing what they see. And most with CVI also have ocular (eye) conditions.
  6. CVI causes children to display unique visual behaviors commonly seen when there’s damage or interruption to the brain’s visual system.
  7. CVI is typically diagnosed when abnormal visual responses can’t be attributed merely to the eyes.

That said, people with CVI have different levels of visual impairment. There’s no one-size-fits-all model, and each person’s presentation is unique. Diagnosis is based on a constellation of symptoms. Some people have many areas that impact function; others have a few.

“CVI is not a monolithic condition. A child’s motor skills and senses can all be impacted to various degrees,” Kran says.

But, again, there are common visual behaviors and traits associated with CVI. Many kids with CVI will have visual symptoms that first appear as babies. You might notice that your baby has trouble making or maintaining eye contact. They might become cranky or get tired easily in unfamiliar or busy environments. They could have trouble recognizing familiar faces or seeing moving objects.

“Parents will tell me: ‘I’m not sure what my child sees, and I’m not sure if they know who I am,’” Kran says. Trust your instincts. Don’t be afraid of wasting a doctor’s time. You know your child best, and you’re their own best advocate. If your child’s behavior seems unusual, seek medical guidance.

Dr. Barry Kran poses in front of the exam chair in the Low Vision Clinic

Don’t blame yourself.

It’s completely normal to feel overwrought during the diagnosis journey. You might wonder if you could have prevented CVI. Remember: CVI has many causes, and while it’s the most common reason for visual impairment in kids, it’s often underdiagnosed or misdiagnosed. It’s not your fault. You’re doing the best you can by advocating for your child now.

Remember that evaluation for CVI is an ongoing process.

You probably won’t get immediate answers. Unlike other medical conditions, there’s not a blood test or X-ray for CVI. The good news is, CVI diagnosis has evolved, Kran says—and CVI is far better understood than even a decade ago.

“Many people who wouldn’t have been diagnosed 20 years ago are being diagnosed today,” Kran says.

Still, diagnosis can be complicated because many children present with trouble seeing despite a normal eye exam. Don’t be deterred. If you feel your child isn’t using their vision in the same way as other kids, there are many paths to diagnosis.

There is no medical certification program for CVI, and several professionals are capable of diagnosing it. Sometimes, kids with CVI are diagnosed by a pediatric ophthalmologist, an optometrist, or a neurologist. Others are diagnosed during the EI process with information from TVIs. In other cases, a pediatrician might make a referral to a vision clinic, Kran says. The CVI community is wonderfully supportive, and many families get recommendations from fellow parents. Word of mouth matters! That said, some areas simply lack CVI providers—though we’re hopeful that this is changing as awareness grows.

You’re the boss, and you have nothing to apologize for at an appointment.

Your child might be squirmy or fussy during an exam. A good doctor will take it in stride, Kran says.

“We see some kids whose parents are apologizing up and down for how supposedly ill-behaved they are — and they’re doing the best they can. The doctor needs to have the philosophy that it’s our job to accommodate the patient. It’s not their job to accommodate us. We’re the host; they’re the guest. That’s critical,” he says.

Do your research.

Kran suggests that parents ask specific questions before booking an appointment to make sure it’s the right fit, such as: “‘How often does your practice evaluate children with CVI? Is your office comfortable caring for individuals with differences? What kind of additional testing can we expect? How can we make sure that my child will have a smooth experience in your office? Do you generally run behind? If so, how should we set up the appointment to keep waiting at a minimum?’ Advocate ahead of time for what they feel your child is going to need,” Kran says.

Be a diplomatic nudge.

Waiting lists can be long, but they’re not impenetrable. 

“Be the appropriately squeaky wheel. Ask to be put on a cancellation list. Be flexible for appointments. Someone who’s going to make themselves available stands a good chance of getting an appointment, especially if they have provided the office with all of the necessary paperwork and reports. This is a win-win, as the office can fill a suddenly open slot and your child can be seen earlier than they would have been otherwise,” Dr. Kran says. 

Come prepared.

When it’s time for your appointment, arm yourself with your child’s medical history in addition to your anecdotal observations, and ask if you can send information in advance for review. This isn’t a burden for your doctor. It’s an essential diagnostic tool. Kran recommends:

You can learn a lot about a provider’s office by how they respond when you ask what to bring, Kran says.

“Look to book an appointment with someone whose office would be willing to ask for that information,” he says — and be wary of a provider who says not to bother bringing it.

In dimly lit room, a clinician uses a light to examine Grace's eye.

Make the most of time between doctor’s visits.

Kran urges parents to maintain a “simplified but enriched environment” ideal for CVI as they await appointments. (Find helpful strategies here.) Much of it will be trial and error. That’s OK. What does your child like? What do they dislike? Which activities excite them? Which tire them out? Share their preferences with your provider during your visit (and with your caregivers and educators as well). Time between appointments isn’t wasted time; it’s an opportunity to collect valuable information.

“CVI diagnosis isn’t a straight line. It’s a puzzle. The more information the parents can observe and collect, the easier it is for me to confirm CVI,” Kran says.

 A Word on Magnetic resonance imaging:

Kids with CVI can have normal MRIs. “Structure doesn’t always equal function. Oftentimes it can, but it doesn’t mean that it does,” Kran says. You know your child best. If their MRI is normal but you still suspect CVI, continue to advocate.

CVI families are amazing allies.

Sometimes, other parents are the best resources of all, ready with doctor recommendations, networking suggestions, and treatment ideas. “Lean on others who have been down this road before,” Kran urges. “Word of mouth and parent networks matter. Parents are amazing resources, anchors, and advocates in the educational and medical realm.”

Many parents rely on word of mouth about doctors, research, and resources from CVI networking groups, such as CVI Now and the CVI Now Parents Group. CVI Scotland is another of Kran’s favorite resources for at-home learning, especially their educational videos. He urges parents to share clips that resonate with their vision provider and EI team.

“It takes a village to raise a child. This is true in spades for someone with vision and other disabilities, especially a brain-based vision disability. It takes a community and a team,” Kran says.

You’re entitled to a second opinion.

Kran sees many families through word of mouth, conferences, EI groups, and social media. If you’re dissatisfied with your current provider’s consideration of CVI, leverage those resources to find a fit. Even excellent eye doctors simply might not specialize in this diagnosis.

“As their child’s champion, parents should feel comfortable pursuing an additional opinion from those who are well-educated about CVI. Due to the various ways patients find us, it’s [common] for our patients to have a vision care specialist for typical vision care and see us for clinical functional low-vision care,” he says.

We know how hard it can be — emotionally and often financially — to seek multiple opinions. Again, leverage the support of the CVI parent community whenever possible to maximize the efficiency of your search through trusted recommendations and word of mouth.

Approach your ongoing appointments from a place of strength.

Kran always tries to emphasize what a child does well, and you can, too! Your child is doing the best they can. Kids with CVI have plenty of strengths, even if they fuss during a doctor’s appointment. Your child will grow, evolve, and learn after diagnosis. Be wary of a doctor who tries to predict your child’s trajectory from a place of pessimism or complete certainty. This is just the beginning. You have plenty of reason for hope.

“Generally, there’s going to be improvement,” Kran says. Remember: An empowered parent is your child’s best asset.

Learn more about what to do after your child’s CVI diagnosis here.

Henry’s love and passion for riding our public transportation trains and buses is going on three years strong now. So we’ve been able to get gifts connected to this love. A few favorites: MBTA train toy models and MBTA t-shirts and sweatshirts. For his recent birthday, a fellow CVI friend got him this train toy with music, lights, and movement, and he loves it. We also got some gifts outside this interest. The DRIVEN toy vehicle line has been great to go back to again and again. Fidgets and sensory toys are always a win because he can get into them immediately: keyboard fidgets and a cheap light-up spinner at Walgreens. We got him the Pop It! Pro last year, and while the light-up game goes a bit too fast for him, he really likes engaging with it. Honestly, the best gift is a train ride to get his favorite dairy-free ice cream.

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