As a parent, trying to keep track of potential health issues can be stressful, especially when some conditions are relatively unknown, and your loved ones might not be able to communicate when something is “wrong.” This can be especially stressful for parents of children with Down syndrome as specific health problems ranging from vision and hearing difficulty to heart defects and gastrointestinal problems are more common.

Jeanne Doherty, of the Massachusetts Down Syndrome Congress, discussing what advice she would give to a parent of a child with Down syndrome who’s already got a checklist of health conditions to monitor for at a 2019 World KC Day celebration.

Down syndrome can affect the maturing eye which can impact the proper development of vision in children and adults. More than half of people with Down syndrome experience an eye disease at some point in their lives, so caregivers and doctors should monitor their vision closely. One condition that is often missed or misdiagnosed, but has a higher occurrence in this population, is keratoconus. Although it is considered a rare condition, research shows that 5-15% of people with Down syndrome are affected by keratoconus.

Keep reading to learn more about potential vision issues that people with Down syndrome might face, why they should receive vision tests regularly, and potential treatment options for those with keratoconus from one of our keratoconus experts.

Vision Issues in People with Special Needs

Experiencing visual changes, such as blurry or distorted vision, can be an unsettling experience for anyone. While everyone processes changes in their health differently, people with special needs, particularly Down syndrome, may have difficulty communicating with caregivers and can be less likely to report changes in vision. Even if your loved ones are not complaining of vision challenges, there are small signs that may indicate a problem.

If you start to notice any behavioral changes in your child – holding objects and screens closer to their face or squinting more – these may be signs that they are having some trouble with their vision. It’s important to connect with your physician to see if there are any other potential issues or vision changes you should be screening or monitoring. Many parents and caregivers aren’t aware of keratoconus, and that, combined with a person who is less likely to report vision changes, creates an often-difficult combination. Ultimately, keratoconus can impact an individual’s ability to function at their highest level, especially since it is a progressive condition and may continue to affect a person’s vision over time.

Jeanne Doherty, of the Massachusetts Down Syndrome Congress, discusses some challenges of getting a proper diagnosis for people with Down syndrome at a 2019 World KC Day celebration.


Testing for Keratoconus

To diagnose vision issues as early as possible, caregivers of children with special needs should schedule yearly (or bi-yearly) eye exams beginning in infancy to monitor any vision changes. By checking your loved one’s vision yearly, your eye care professionals will be able to notice any abnormalities or changes and take proactive action in treating them.

With a higher prevalence of keratoconus in people with Down syndrome, it’s important to talk to an ophthalmologist about keratoconus and request that screenings become part of yearly exams, especially in the teen and early adult years.

Sylvia and her daughter Sarah share their thoughts on the high incidence of keratoconus in people with Down syndrome, at a 2019 World KC Day celebration.

Available Treatment Options

While keratoconus can be a challenging condition, it can be managed effectively when detected early. Contact lenses or glasses can be used to help correct vision, while FDA-approved corneal cross-linking is a non-invasive treatment to slow or halt keratoconus that is progressive. When progressive keratoconus is diagnosed late, a more invasive corneal transplant can be required, which often results in a prolonged recovery time and need for rehabilitation.

We spoke with Dr. Erin Stahl, a Pediatric Ophthalmologist at Children’s Mercy Hospital Kansas City, to discuss the unique considerations for families with children who have special needs and keratoconus, specifically how to determine the best treatment options.

My loved one has Down syndrome and keratoconus. What do we need to take into consideration when looking into treatment options?

Pediatric ophthalmologists are very experienced in working with all children and adolescents. There are also adult corneal specialists who work often with these age groups. Children and adolescents with special needs should be cared for by someone who is comfortable examining young patients and has the tools in their office to make the exam fun and easy.

One of the most limiting factors in choosing a treatment option is the availability for different levels of sedation during the treatment. Most patients with special needs will need sedation for corneal cross-linking treatment. The procedure takes about an hour, so sedation can be needed to ensure the patient is calm and has no pain or discomfort during the procedure. Anesthesia for the procedure can range from topical numbing drops to general anesthesia. Pediatric anesthesia is safest when done by pediatric anesthesiologists in a monitored setting. These decisions are made with your family depending on the needs of your loved one.


Be an Advocate!

As a health advocate for your loved ones, vision is an important piece of the puzzle, especially if they may not realize or be able to articulate that they are having trouble seeing. If you notice something different in your child’s behavior, the reason may have to do with a change in their health, no matter how minor that change may be. If you have a feeling that something is wrong, make an appointment with your primary care physician or eye care professional to rule out anything serious. If it is a problem with your loved one’s vision, a simple solution may be that your child needs glasses, or it may be a more serious condition which is best diagnosed early.

Sylvia and her daughter Sarah discussing why it’s so important for parents to advocate for their children at a 2019 World KC Day celebration.

If you have a loved one with Down syndrome who is also living with keratoconus, visit our website for more information on the condition and available treatment options, or to find a physician in your area who is performing FDA-approved cross-linking. Also, don’t forget to follow us on Twitter, Facebook, and Instagram.

Dr. Erin Stahl is a paid consultant for Glaukos.