What is photophobia?
Photophobia literally translates as ‘fear of light’, which isn’t a very good description. Alternatively the term photoaversion is used. This is avoidance of bright light for the comfort of the eyes. Your child may dislike bright light or even what seems to be normal levels of lighting because they find it uncomfortable and / or because they see less well in bright illumination.
‘Discomfort glare’ or dazzle is like the feeling you may have coming out of a darkened cinema on a summer’s day. The light feels uncomfortable for a few moments only until your retina has had a chance to adapt (your pupils go smaller almost instantly). For a photophobic child the discomfort is more marked and prolonged than normal. A large pupil that does not go smaller even in bright light is one cause of too much light going into the eye and a cause of discomfort. Some children who have had cataract surgery have pupils that do not change in size. Other children who have poor vision in one of their eyes are unaware in normal lighting of the poor central vision in their ‘weaker’ eye when both eyes are open. The blurred image from the ‘weak’ eye is suppressed by their brain in the same way that you do not feel the strap of the watch that you wear on the same wrist each day. However if the light is bright the image from the weaker eye is superimposed on the image from their good eye like a blurry bright film. They will feel more comfortable if they close the weaker eye or if they shield their eyes with a cap or sunglasses.
‘Disability glare‘ describes the how bright light actually affects the vision of the eye. Light may be scattered within the eye in children who have partial cataracts if their natural lens has scattered opaque dots in it. A child who has scars in their cornea caused by glaucoma also suffers from light scatter making the eye less efficient at focussing as rays do not pass through in straight lines to be focus and form an image on the retina, but are sent off course by hitting the opacity. The effect of this glare is that vision in bright light is impaired like looking through a misted car windscreen as it catches bright sunlight; all you can see is the light being scattered and the effect is one of ‘white out’. A similar effect is observed if you try to look through glass with little bubbles or frosting often used in bathroom windows. On a dull day you can see some of the view outside but on a bright day light sparkles in the frosting and the view is obscured. Adults with early adult type cataracts suffer from this type of glare when trying to drive at night they are dazzled and cannot see properly when an oncoming car lights pass by but still see quite well in daytime.
If your child can read the letters on an eye chart well and sees well in a classroom that does not have windows or has curtains but complains they cannot see in a sunny classroom they may have glare. If their vision test is repeated with the test performed whilst a pentorch light is shone from the side just in front of their ear this may give an idea of how much glare is affecting their vision.
Both types of photophobia can range from being a mild nuisance to very disabling with discomfort glare likely to be the dominant problem for those with glaucoma and disability glare being the dominant problem for those with partial cataracts, but many children will have elements of both.
The names still aren’t satisfactory as the word ‘discomfort’ can really downplay just how painful it can be, and by contrast with the word ‘disability’ imply that it’s not disabling. Both conditions can make your child fearful of light, but the primary problem is often not anxiety, some children don’t become anxious at all, but the effect that bright light has on vision.
How do I know if my child has photophobia?
Most children with cataracts have some photophobia, although not always enough to cause big problems. Where there are partial cataracts that have been left in place, or membranes, after-cataracts and debris from surgery are interfering with vision then the photophobia may be fairly severe. It can also be severe if your child has developed glaucoma.
Young babies often just cry a lot if it’s too bright so it can be hard to spot that the light is the problem, amongst the many reasons why a baby might be crying. Slightly older babies will turn away from light sources if they can, but will also cry ‘inexplicably’ if they can’t escape the light. Toddlers will typically frown if it’s just a bit bright, screw up their eyes if it’s even brighter and turn away if it’s much too bright. They may also become very distressed when it’s bright, refuse to walk towards the light or want to be picked up and you may notice that they can’t seem to see as well in bright conditions. It’s quite easy for a baby or young child with photophobia to be seen as ‘difficult’ or ‘fussy’ if the reason for their distress isn’t understood. Older children generally seem to cope better with photophobia, but may find wearing a peaked cap or doing anything that makes them seem ‘different’ harder than young children do.
If your child suddenly becomes photophobic or more photophobic, it’s important that they see their ophthalmologist promptly as it can be a sign of a problem developing.
What can I do to help?
These are a few ideas, some of which are quite expensive, not all of them will work for every child and many of them are more than some children need:
1. Give your child a peaked cap or broad-brimmed hat to wear and encourage them to wear it. Make sure you choose a dark colour of fabric for the inside of the brim and not a light reflective colour or shiny fabric which could make their discomfort worse as it may refect light into their eyes rather than shield them. Some children, especially those with lower vision, may dislike wearing a broad-brimmed hat as it will interfere a lot with hearing. A few children with very low vision may dislike wearing even a peaked cap because of the effect on hearing; if this is the case your child is probably finding their hearing more useful than their sight and it’s probably better not to use a hat where they don’t want it. Baseball caps are inexpensive and widely available; go for a design with a stiff, long peak as some designs made for young babies have soft, short peaks that don’t work so well. Baseball caps are not the only type of peaked cap; traditional flat or cloth caps look very smart on boys, suit some occasions better and are warmer in winter. For girls there are often fashion hats available with a peak, especially in winter, although it can be wise to buy the next couple of sizes if you find something really nice. Many children often enjoy the attention and positive comments they get from wearing a special hat.
2. Use a pushchair with a deep hood and/or an an effective, dark shade for your pushchair such as a Shade-a-Babe (a white, lacy parasol just won’t help!)
3. Give your child some sunglasses or clip on sunglasses, or dark over-glasses for their specs.
4. Get your child some NHS tinted glasses or photochromic (transitions) lenses.
5. Look at other equipment carefully before you choose it and think about how it might help, for example some backpack baby carriers have an effective dark sunshade you can buy as an accessory (e.g. Macpac), some don’t.
6. Use car window shades. We recommend WindowSox as being the best we’ve found.
7. Have your car windows tinted
8. Think about the extra glare off things like snow, sand and water (is a skiing holiday going to be fun?)
9. Maximise the adjustability of lighting in you home, use blinds and curtains for example in the room your child usually plays in. You could fit dimmers to the lights and use a variety of lamps and task lighting around the room. If you can find lighting that it would be safe for your child to adjust him/herself, many children will (after a bit of playing to begin with) chose the lighting level that they find most helpful. Look carefully around your home; does the sunlight stream in through the bathroom window when your child needs to brush his or her teeth in the morning? Then you may need to fit a blind or curtains.
10. Have a look at your home and think about how you can shift things around to help; for example moving your child’s place at the table so that his/her back is to the window instead of facing it
11. Take your child out to play in the early morning or evening when it’s less bright.
12. Get good wet and cold weather clothes for your child (and yourself!) so that he or she can enjoy playing out of doors in ‘bad’ weather when it’s not so bright and choose shady play areas.
13. Public baby change facilities often require some creativity; they are very frequently lit by very bright overhead halogen spotlights. You may need to remember ot put your baby’s sunglasses on specially, or find alternative nappy-change venues.
14. Plant some (quick growing) trees in your garden or install trellis with climbing plants or awnings if your garden tends to be bright.
15. Give your baby the words they need to tell you what the problem is, so ask if it’s too bright for them and comment about how bright or dull it is so that when your child starts to talk they can tell you when it’s ‘Too bright!’.
16. There should be money available to pay for adaptations to your home, if they’re needed, from your local council, and there may be grant funding available for some other things from various charities and also possibly the Family Fund or via direct payments form your local council.
17. Make sure your child’s other carers / nursery / school have understood what your child needs to help them with their photophobia. Some settings are very good at making sure children are wearing hats and at fitting and using window blinds or thinking about where a child is seated, others are not. QTVIs (Qualified Teachers of the Visually Impaired) should help with this.
18. You may want to buy a lux meter. They used to be expensive, but can now be found for under £20 second hand. A lux meter actually measures the light levels your child is experiencing in different situations so you have a picture of what your child can cope with and what they struggle with. Healthy eyes are so good at adjusting to changing light levels that it can be hard for parents and carers to notice when it’s bright and when it’s not, and it’s very helpful to develop an awareness of when you child might be struggling. On a bright day outdoors, it&’s quite usual to get measures of 50000+ lux whereas indoors, in a gently lit room in the evening measurements may be around 20 lux.
It is not just the level of the light that matters, it is the angle that the light is at. A bright day walking across the grass may be fine but if you are walking on light sand, by water or snow, the light reflects into the eyes. You should hold the lux meter at your child’s eye height and in the direction they are looking to get an accurate measure of how much light is actually entering their eyes. It can be very surprising just how much the amount of light entering the eye varies, even just looking in different directions on the same spot. It doesn’t take very long at all to build up a good idea of what light levels are OK and when it becomes a problem, just by watching your child and taking a few measurements.
Getting a clear idea of the levels of light that your child finds easiest and those that cause problems can very helpful in making sure that environments where your child spends time are be adapted properly. This can be especially useful when it comes to making arrangements with schools, nurseries or other places where your child goes regularly as you can actually give measurable numbers for what’s OK and what’s not. Giving appropriate light levels can be invaluable as part of a statement of special educational needs.
19. If your child is photophobic, you will need to think about light wherever your child goes. If you take you child swimming he or she may have a much better time in an old-fashioned swimming pool with brown tiles, orangey lighting and no windows, than in a beautiful modern one with lots of glass and reflection off the water; and if you do go to the modern one, your child might need to wear sunglasses in the pool.
Author: Anna, parent
This article has been checked for medical accuracy by Miss Isabelle Russell-Eggitt, Consultant Pediatric Ophthalmologist, Great Ormond Street Hospital, London.