Down syndrome and your child's eyes: a check-up schedule for the whole of childhood
A paediatrician's checklist for a child with Down syndrome is long, and the eye part of it does not stop after the newborn check. Here is the shape of the schedule and why it runs across childhood.
- Down syndrome carries a higher chance of several eye conditions: refractive error, strabismus, cataract, and in the teenage years, keratoconus.
- The American Academy of Pediatrics recommends an eye examination within the first six months of life, then a set schedule of checks through childhood and adolescence.
- Some of these conditions, including cataract and glaucoma, are not something a parent can spot by watching a child's behaviour, which is why the checks continue even when a child seems to be seeing well.
- Around half of children with Down syndrome develop a refractive error that could lead to a lazy eye between three and five years old, and catching it early is what makes early treatment possible.
- This schedule belongs to your child's own paediatric ophthalmologist to adapt; ask how it applies to your child specifically.
The paediatrician's checklist for a child with Down syndrome is long: heart, hearing, thyroid, and a good deal more. The eyes are on that list too, and unlike some of the others, the eye part of it does not stop after the first few checks. It carries on, on a set schedule, through the toddler years, school years and into the teens.
That is not because something is expected to go wrong. It is because several eye conditions occur more often in children with Down syndrome than in the general population, some of them from birth and some that only appear later, and a structured schedule is how they get caught either way.
Why does Down syndrome need its own eye check schedule?
Because the numbers are genuinely different. Refractive errors needing glasses, strabismus (eyes that are not pointing the same way), cataract, and in the teenage years keratoconus, a gradual change in the shape of the cornea, all occur at higher rates than in children generally. According to AAPOS, the American Association for Pediatric Ophthalmology and Strabismus, eye disease overall affects an estimated 60 to 80 percent of individuals with Down syndrome, ranging from minor findings to conditions that genuinely affect sight.
A general childhood eye check timeline is built around the general population's risks. When a group of children carries a known, higher chance of specific conditions, the sensible response is a schedule built around that, rather than waiting to see whether a problem announces itself.
What is the recommended eye exam schedule for a child with Down syndrome?
The American Academy of Pediatrics recommends an eye examination by an ophthalmologist within the first six months of life, screening for strabismus, cataract, blocked tear ducts, refractive error, glaucoma and nystagmus (a rhythmic, involuntary movement of the eyes). From one to five years, it recommends an annual referral or a photoscreening-based evaluation, a camera-based test that estimates focus and alignment without needing the child to cooperate with letters or pictures. From five to twelve, photoscreening every two years, or annually if that is not available. From twelve to twenty-one, annual visual acuity testing or photoscreening.
I say this schedule belongs to your child's own doctor to adapt, and I mean it. If your child already has a known eye finding, the sensible plan is closer visits, not the standard interval. This schedule is the starting point a paediatric ophthalmologist works from, not a fixed rule that overrides their judgement of your particular child.
Why does the schedule run the whole of childhood, not just infancy?
Because not everything shows up at birth. Strabismus in Down syndrome is typically acquired rather than present from the start, meaning it tends to develop later in childhood. Keratoconus occurs at a meaningfully higher rate in teenagers and adults with Down syndrome than in the general population, so it simply is not on the radar of a newborn check. A cataract can be present at birth, or it can develop over time, which is exactly why a clear result at six months does not close the file.
These are wide ranges precisely because different studies have found different rates, and no single number applies to every child. What they share is the same lesson: a single clear check early on tells you about that moment, not about the years that follow.
My child seems to see fine. Do we still need the checks?
Yes, and this is the part that is easiest to miss. A cataract, early glaucoma, and some refractive errors are not reliably visible from a child's behaviour, particularly when one eye is doing enough work to compensate for a weaker one. A child can seem to be seeing perfectly well while one eye is quietly not developing normally, which is the same reason we test children's eyes without needing them to read a letter chart: much of what matters is measured, not guessed at from watching.
The checks exist to catch what watching alone cannot. That is the whole logic of a schedule over a wait-and-see approach, and it is worth holding onto on the days the appointment feels unnecessary because nothing seems wrong.
This is also where the glasses question usually comes up. Nearly four in five children with Down syndrome are found to have some degree of refractive error outside the normal range in the research literature, which is a real and useful number, but it describes a group, not your individual child. A proper eye test, not a guess based on the statistic, is how this gets answered for your child specifically. If glasses are recommended, what happens after a child is prescribed glasses covers first prescriptions and how children typically adjust to wearing them.
What is keratoconus, and why does it appear later?
Keratoconus is a gradual thinning and steepening of the cornea, the clear window at the front of the eye, which blurs and distorts vision as the shape changes. It is one of the strongest known associations with Down syndrome, occurring at a substantially higher rate in teenagers and adults than in the general population. It is also linked, in the wider research on keratoconus generally, with frequent and vigorous eye rubbing. If your child rubs their eyes often and hard, it is worth mentioning at the eye check rather than treating it as an unrelated habit; why kids rub their eyes is a useful place to start.
What does a check actually involve for a child who cannot follow instructions?
Far less than most parents expect in terms of cooperation. A young child's eye examination does not require reading letters or answering questions. Alignment is checked by watching how a reflected light sits in each eye. Focus is measured with a light and a set of lenses, a technique called retinoscopy, which reads the answer from the eye itself rather than from the child. Where a response is needed at all, a matched picture or a pointed finger does the job that a spoken letter would otherwise do. A child on your lap, mildly bored, is usually exactly what a good appointment looks like.
A single clear check at six months tells you about six months old. It does not close the file for the years after it.
Is strabismus in Down syndrome the same as an ordinary childhood squint?
It is still strabismus in the strict sense: the two eyes are not pointing in the same direction. What differs is how often it happens and when it tends to appear. It occurs in a meaningful proportion of children with Down syndrome, more often than in children generally, and it is more likely to develop later in childhood than to be present at birth, which is one of the reasons it is checked for at every stage of the recommended schedule rather than only in infancy. A sudden new turn in either eye, at any age, is worth same-day attention rather than waiting for the next scheduled visit; our piece on crossed eyes in newborns explains how to tell a true turn from the common illusion of one in a very young baby.
The one thing worth doing with all of this is simple: keep the schedule, even in the years nothing seems to be wrong. Bring it up with your child's paediatrician if an eye appointment has slipped, and bring it up with the eye doctor if your child has a known condition that might reasonably mean more frequent checks than the standard interval. None of this requires you to watch for symptoms at home; it requires you to keep the appointments, and let the examination do the watching that a parent's eyes, however careful, cannot do on their own.
- You notice a white or grey glow in one or both pupils, in photos or in the room.
- One eye appears to turn inward or outward, especially if it started suddenly.
- Your child seems to be struggling to see, is unusually clumsy for their stage, or holds objects very close to their face.
- You notice a cloudiness in the black centre of the eye.
- Your child rubs one or both eyes frequently and persistently, well beyond ordinary tiredness.
Common questions
Why does Down syndrome need its own eye check schedule?
What is the recommended eye exam schedule for a child with Down syndrome?
How common are eye problems in Down syndrome, really?
My child with Down syndrome seems to see fine. Do we still need the checks?
What is keratoconus, and why does it show up later?
Does my child need glasses just because they have Down syndrome?
What does an eye check actually involve for a young child who cannot read letters or cooperate with instructions?
Is strabismus in Down syndrome the same as ordinary childhood squint?
- American Academy of Pediatrics · Health Supervision for Children and Adolescents With Down Syndrome, Pediatrics 149(5):e2022057010 (2022) · publications.aap.org
- AAPOS · Down Syndrome · aapos.org
- EyeWiki · Trisomy 21/Down Syndrome · eyewiki.org
- National Down Syndrome Society · Vision and Down Syndrome · ndss.org