Catching keratoconus early in kids: Why timing matters

Keratoconus is often filed away as a young-adult diagnosis, but for pediatric and adolescent patients the disease can behave very differently—presenting earlier, progressing faster, and hiding behind well-preserved best-corrected vision until damage is already underway.

With August marking Children's Eye Health and Safety Month, the case for early detection has fresh urgency: corneal crosslinking (CXL) can reliably halt progression, but only if progressive disease is identified before vision is lost. That places ophthalmologists, optometrists, and even pediatricians on the front line of catching the subtle refractive and topographic clues that distinguish a routine astigmatic shift from early ectasia.

In this Q&A, Neel S. Vaidya, MD, MPH, MBA, of Chicago Cornea Consultants and Rush University Medical Center, discusses how keratoconus manifests in children and teens, the red flags that should lower a clinician's threshold to refer, and why he prioritizes prompt crosslinking as first-line therapy. Vaidya—for whom keratoconus care comprises 10% to 15% of his practice, a significant share of it adolescent—also shares practical strategies for imaging anxious young patients and for counseling families on eye rubbing, the single most controllable risk factor for progression.

Note: transcript has been lightly edited for clarity and length.

The Q&A

Keratoconus is often thought of as a young-adult diagnosis. What should clinicians understand about how the disease presents—and how aggressively it can progress—in children and teens specifically?

Neel S. Vaidya, MD, MPH, MBA: Keratoconus can present at any age, though generally we think of the disease manifesting in the teens and early 20s. That said, I have seen patients in the 10- to 12-year age range with keratoconus, and these can be some of the most aggressive cases in terms of progression. The younger the patient at onset, the more closely they need to be watched.

Early detection is a recurring theme this month. What are the earliest signs of keratoconus in a pediatric patient that a comprehensive ophthalmologist, optometrist, or even a pediatrician might catch—and which are most easily missed?

Vaidya: Any vision issue in a younger child warrants further exploration because children often can’t express their problems directly. Struggling to see the board at school, failing a school vision screening, or noticeable squinting are all signs that should trigger an examination. In particular, any young child with significant astigmatism—especially oblique astigmatism—should be closely monitored for the development of ectasia.

Are there red flags in a child’s history or symptoms—frequent prescription changes, eye rubbing, allergic disease, or a family history—that should lower a clinician’s threshold to screen or refer?

Vaidya: All of the above are classic warning signs that I see in patients who are eventually diagnosed with keratoconus. When a patient has these warning signs, especially coupled with vision complaints, I recommend a full eye exam with an eye care provider that includes refraction and, if possible, corneal topography or tomography.

What role does corneal imaging—topography or tomography—play in catching keratoconus early in this age group, and how do you weigh screening against the practical realities of examining younger patients?

Vaidya: Topography and tomography are critical for detecting early keratoconus. Many patients with mild or early disease have well-preserved best-corrected vision, often with minimal refractive astigmatism. Because keratoconus is progressive, identifying these cases with imaging before visual issues develop is critical to preserving vision long-term.

Once you’ve confirmed progressive keratoconus in a child or teen, how does your treatment approach—and your urgency around corneal crosslinking—differ from what you’d do in an adult?

Vaidya: In any patient I diagnose with keratoconus, I offer corneal crosslinking if they are a candidate. Prompt crosslinking has been shown time and again to be a safe and effective procedure to halt progression, so I prioritize it as first-line treatment in my practice. In children and teens, where progression can be especially aggressive, that urgency is even more important.

What are the biggest challenges in managing keratoconus in pediatric patients—from cooperation during procedures to adherence with rigid or specialty contact lenses—and how do you work around them?

Vaidya: As with any examination in a pediatric patient, patience and compassion are paramount to success. Children are often afraid or anxious about having their eyes examined, so enlisting the parents’ help in calming and reassuring them is critical. I show patients that the machines don’t touch their eyes—it’s just a fancy camera—and I’ve even had my imagers take pictures of a parent’s eye first to show the child there’s nothing to fear. These strategies can calm an anxious child and greatly improve cooperation.

How do you counsel families at the time of diagnosis, particularly around controlling eye rubbing and monitoring for progression over the long term?

Vaidya: Keratoconus is progressive by nature, and although crosslinking is extremely effective at stopping progression, it isn’t 100%. Ongoing eye rubbing is a known risk factor for progression and is the single most controllable risk factor a patient has. So I counsel patients and parents that controlling eye rubbing is paramount to keeping the disease stable, even after crosslinking. I see my keratoconus patients every 6 months for the first few years after crosslinking to confirm stability, and then yearly after that.

For Children’s Eye Health and Safety Month, what’s the single most important message you’d want to leave with clinicians about detecting and treating keratoconus early in kids and teens?

Vaidya: Be cognizant of a child’s visual functionality. Keratoconus, especially early on, can be a somewhat silent disease. Teens and adolescents may not vocalize mild blurred vision, but subtle changes—increasing refractive error, shifting astigmatism, more squinting—can all be clues that something is developing. With early detection and proper treatment, patients with keratoconus can maintain excellent vision. But early detection really is the key.