For parents

Eye test with a child with Down's syndrome

Children with Down's syndrome are at much greater risk of eye and vision disorders than are typically developing children.They therefore need regular eye examinations, are more likely to need glasses than typical children, and may need compensation in the classroom for visual deficits.

Below are some of the most commonly asked questions by parents.

We understand that coming for an eye exam can be both very unusual and a little scary. We understand that lots of children and young people like to know what is to be expected, and this guide for your child or young person may be helpful to introduce them to what will happen in the eye exam. You are also welcome to come for a visit in the days leading up to the eye exam if you feel that familiarising your son or daughter with our practice will help them participate more easily on the day.

Guide to visiting the eye clinic

When you come to visit us in the eye clinic, you'll come to the reception desk and let us know that you have arrived. You can then take a seat and read a magazine, or have a look around until the optometrist is ready to see you.

We have some rooms which are full of toys and games, and these are around the corner from the main clinic - we will take you around and into the 'special assessment clinic' to have your eye check.

The optometrist will usually ask you to sit in a special seat, so that it's easy to see the things that we want to show you. Often next, there will be a conversation about your eyes with yourself and your parent or friend who brings you along. We'll ask all about your eyes and whether or not you've had any glasses, or problems with them before, and about your family's eyes. We'll also ask about your general health, so it's useful to have a list of medications with you if you take any.

We will start looking at your vision, and how you see things around you. Sometimes we will use letters, and other times pictures - we will decide together what you prefer. We'll show you some things to look at in the distance, but also some very tiny things up close too.

It's important we check how your eyes work together - and sometimes you'll be asked to look at a light to do this. We might also need to cover up one of your eyes at a time. It's useful if you can practice this before you come, by covering up one eye at a time, or by someone else covering up one eye for you.

You might be asked to wear a pair of silly glasses so that we can put little window lenses in front of your eyes. These can feel a little strange and look a little silly, but are great fun and they won't need to stay on for long.

We will ask if it's ok to turn the lights off, and ask you to look at a light that we shine in your eyes. Although it's bright, it doesn't hurt, and we don't often use any eye drops for this bit. We'll hold some window lenses in front of your eyes, and this helps us to work out if you need any glasses.

We will then ask to bring another torch closer to look at the back of your eyes to check that they are healthy. You will be asked to look in lots of different directions, and your parents or your friend may have to join in too!

When the lights go on, we'll all have a chat about your eyes and decide if your eyes are healthy, if you need any glasses to help you see better, and let you know when you need to come back and visit again.

If you need glasses, you'll be introduced to one of our lens experts to pick a great pair that you like!

Your child is more likely to have an eye problem than a child who does not have Down's syndrome; they are 10 times more likely to need to wear glasses and 7 times more likely to have a squint (eye turn). Our work has shown that the majority of children with Down's syndrome (about 73%) also have reduced accommodation (near focusing).

Your child is also more likely to suffer from eye infections (e.g. blepharitis, which shows up as tiny crusts on eye lashes), nystagmus (wobbly eyes), and as they get older, cataract (cloudy lens) and keratoconus (progressive thinning and steepening of the front of the eye). Even if your child does not have any of these problems, our work shows that they will not have as good detail vision as a child of the same age without Down's syndrome.

Some problems will be obvious (for example, nystagmus). If these conditions are not picked up at medical checks, ask your doctor to refer your child to an eye specialist (ophthalmologist). Other problems (such as long or short sight and poor accommodation) may be less obvious to you.

Take your child for regular eye examinations either at the hospital or to a local optometrist/optician. Our finding that most children with Down's syndrome have poor near focusing is fairly recent, so you may need to ask for your child's near vision and focusing to be checked. (If you wish, take this page along with you).

Your child should have regular eye checks as soon as possible if you suspect any problems. Even babies as young as 6 months can have their eyes checked successfully by an experienced professional. The earlier an eye problem is detected the better.

The Down's Syndrome Medical Interest Group recommends a full eye examination at 18 months to 2 years for ALL children with Down's syndrome. The eye care professional looking after your child will then decide how often his/her eyes need checking, but don't leave it longer than 2 years between eye tests.

Some eye conditions are treatable, for example, if your child is long- or short-sighted glasses can be prescribed to help them see better. We know now that poor focusing can be greatly helped by bifocals. However, it is not possible to treat all eye conditions (e.g. nystagmus) and your child may need extra support if vision is affected.

If your child is in school in the UK, your Education Authority has a support service especially for children with vision problems (Visual Impairment or VI support service). We recommend that all children with Down's syndrome are referred to their VI support service. If this hasn't happened, the school can ask the service to see your child.

Even if your child is wearing glasses, or has no eye problems, they will not see fine detail or small contrast changes as well as other children.

An example of how your child's vision might be affected. Activities that require good detail vision, like schoolwork, will be affected most. But, more general activities, like outdoor play will not be affected as much. At school, your child should be writing in pen, not pencil (which is faint and difficult to see). The teacher should go over faint lines with black pen so that your child can write on the lines. Some enlargement of small print may be needed when your child becomes a fluent reader.

See a garden scene through the eyes of a person with Down's syndrome.

An eye care professional is someone who is trained to examine eyes. They will be able to tell if your child needs to wear glasses and if the eyes are healthy. Your child may see the following people: ophthalmologist (specialist hospital eye doctor), optometrist / ophthalmic optician (prescribes glasses and checks eye health), orthoptist (checks vision and eye alignment and manages binocular vision anomalies, usually in a hospital or clinic), dispensing optician (helps choose and fit glasses).

If you have been referred by a GP to an ophthalmologist then your child will be seen at your local Hospital Eye Department. Your child will be under the care of a nominated ophthalmologist but may also be seen regularly by an optometrist and/or an orthoptist at the Hospital. The ophthalmologist, optometrist and orthoptist will work together to provide appropriate eye care for your child.

Alternatively, you may be advised to take your child to a local optometrist. The SeeAbility website has a list of UK optometrists who are happy to test people with learning disability. Simply go to www.seeability.org. Or ask other parents to recommend an optometrist whom they have found to be good with children. And we are, of course always delighted to see any child or adult with Down's syndrome in our clinic here in Cardiff.

There could be many reasons why your child won't wear the glasses prescribed. The first thing you should do is have the fit of the glasses checked; no one wants to wear glasses that are uncomfortable. Next, have the prescription checked by the person who prescribed the glasses. If the glasses fit properly and the prescription is correct then it may be that the feel of the glasses, and seeing clearly are simply unfamiliar experiences. It will be asking too much to expect your child to wear the glasses all of the time in the early stages. May sure that you understand what the glasses are for, and when it is most important for your child to wear them. You can then encourage your child to wear their glasses in a number of ways:

  1. Put the glasses on when they are doing an activity with you that is enjoyable. This way your child will learn to associate wearing glasses with a pleasant experience. Make it a short experience, and judge when your child has had enough. Then take the glasses off for them to show that you are not enforcing wear. Build up time at your child's pace.
  2. Put the glasses on in front of a mirror so that your child sees themselves with the glasses on. Children like looking at their own reflection and often forget they have glasses on.
  3. If you or another member of the family wears glasses, make a big show of putting them on for particular tasks. Most children love to copy others.

What we are aiming for is your child realising that they can see better or are more comfortable with the glasses and then choosing to wear them. However long it takes, your child will eventually want to wear the glasses, at least for some of the time.

In the UK, for children under 16 years old, eye examinations and vouchers for glasses are free. If your child is over 16 years old they will have to pay for their eye examination and glasses, unless they fall into any of the following categories:

  • Full time student aged 16, 17 or 18.
  • Receives Income Support.
  • Receives Income-based Jobseeker's Allowance (not Contribution-based).
  • Receives Pension Credit Guarantee Credit.
  • Receives Income-based Employment and Support Allowance (not Contribution-based).
  • Is awarded Universal Credit.
  • Is entitled to, or named on, a valid NHS tax credit exemption certificate.
  • Is named on a valid NHS certificate for full help with health costs (HC2).

A voucher is intended to cover the cost of 'basic' glasses and most opticians carry a range of frames under the voucher scheme. You may have to pay extra if you want a 'designer' frame.

If your child is over 16 years old and falls into any of the following categories they will not have to pay for their eye examination but will have to pay for glasses:

  • Registered blind/partially sighted
  • Suffer from diabetes/glaucoma
  • Considered to be at risk of glaucoma by an ophthalmologist
  • Aged 40 or over and the parent/brother/sister/child of a person who has or had glaucoma

If your child (under 16) is entitled to a voucher for glasses then, they are also entitled to free repairs or replacements. Over 16, a repair/replacement voucher can be issued if it can be shown that the breakage was due entirely to the learning disability the optometrist/optician will need to write a justification.

A voucher for a spare pair can be issued only in special circumstances, such as a very high prescription (rendering the child handicapped without the spectacles) and disability that makes breakages more likely. Again the optometrist/optician will need to write a justification.

Having an extra chromosome can mean needing to have extra eye checks too.

There are some eye problems that are more common in people who have Down's syndrome than in people who don't – and we don't often know why this is.

Firstly, it's much more common to need to wear glasses. This doesn't mean that the eyes are not perfectly healthy, it might just be that they are a little too big or small and that looking through lenses make things much, much clearer.

Whether or not they need glasses for the distance, many young people with Down's syndrome need glasses for reading – this is quite unusual, as a poor close focus isn't something we usually see until later in life – but in Down's syndrome, this may be very normal from a young age, and is why children and young people with Down's syndrome are often wearing bifocals glasses.

There's a lens that sits inside the eye, helping to focus the images we see. This lens naturally gets cloudy with age, and we call it cataract. This seems to happen earlier in young people with Down's syndrome (perhaps in late twenties or thirties) rather than in sixties as we would otherwise expect.

Also – some tiny flecks of cataract exist in most eyes in Down's syndrome – even from a teenager – this is very normal and will not necessarily progress to anything that impacts significantly on sight.

It's important to understand that just because 'cataract' is present, this does not mean that any treatment is required. If this is the case, cataract surgery is available in just the same way as it is for standard cataracts.

Teenagers and those in their twenties are at risk of changes to the cornea, the transparent outer shell of the eye. Whilst usually relatively flat, in 10% of young people it may change shape and become more curved, resulting in poor distance vision and eye rubbing. A treatment is now available when caught in early stages.

This all means that the eyes of young people with Down's syndrome are more likely to change and need to be checked every year or two.

If you are a young person who has Down's syndrome, or you live with someone who has, and you feel their eyesight may be changing, please book an appointment to see us in our special assessment clinic.