Down’s Syndrome, Eye Problems and their Treatment
We don’t know exactly why so many people with Down’s Syndrome suffer from eye problems, we just know that they’re far more likely to than the majority of the population.
There are around 250 genes on chromosome 21, and we don’t yet know what most of them even do.
For whatever reason, people with Down’s Syndrome tend to suffer from eye problems more often and to a greater degree than most others.
Due to this tendency, children with Down’s Syndrome should get regular preventative eye checkups and immediate treatment throughout infancy and childhood to solve as many problems as possible.
Who You’ll Meet to solve eye problems.
There will probably be three or four main doctors who you’ll need to work with in order to provide effective eye care.
An orthoptist is a doctor trained to assess vision in people of all ages and ability levels. This is the doctor who specializes in squints and eye movement disorders.
An opthalmologist is a doctor who specializes in all eye conditions.
An optometrist is a doctor trained to test your child for glasses and other aspects of visual function. He or she can also recognize and refer ocular abnormalities to an appropriate specialist. Optometrists are also able to dispense glasses.
A dispensing optician fits the frames for glasses and arranges to have lenses made to order for individual people.
How Eye Problem Checkups Work
The screening and treatment for eye problems of children with Down’s Syndrome usually consists of the same procedures that apply to any child.
To keep learning difficulties from interfering with the accuracy of a vision test, the screening doctor may use vision tests designed for younger children.
In addition, many children with Down’s Syndrome feel more comfortable if they can sign the pictures they see instead of having to verbalize to communicate.
Your child needs to be examined in detail to ensure overall health of the eye and to see if glasses would be indicated for any given problem.
The first part is preparing the child and eyes for examination.
The first part of the exam usually involves eye drops that cause the pupils of the eye to fix and dilate to test for glasses and to examine the retinal surface at the back interior surface of the eye with a light.
You’ll find that different clinics use different drops. Some clinics still use a substance calledatropine in their eye drops. Atropine is deadly if ingested, and many parents have questioned whether it will be safe as an eye drop for their child. There is no evidence of the potential for harm in using atropine as dilating eye drops, but the pupils may stay dilated longer than if another substance were used.
On a side note, atropine comes from the plant known as belladonna or nightshade. The reason it’s called belladonna is because Italian women used to use drops made from it to dilate their pupils and make themselves more attractive. Bella donna means beautiful lady in Italian. The plant and all of its parts are deadly poisonous, but like many poisonous plants it had significant medical uses in the hands of a competent practitioner.
The second part of the eye exam tests the vision in each individual eye to see if both are equal.
An experienced orthoptist can establish this quite effectively, even in very young children.
Many children with Down’s Syndrome seem to have stronger vision in one eye than the other, so this part of the test is rather important.
The eye test for babies involves a series of cards that offer choices to the baby.
The baby can choose between a plain grey card and a patterned card of some kind.
Since most babies prefer to look at something interesting with contrast, if they can see the pattern they’ll generally choose to look there first. The patterns become fainter and fainter until the baby can’t see it well enough to distinguish between the patterned card and the plain grey one.
Where the baby loses the ability to tell the difference is noted and compared with other babies of a similar age.
Eye Tests for toddlers
Tests for toddlers usually involve a standard set of high-contrast black and white pictures from a measured distance away and asking them to somehow identify what they see, either through naming or matching.
Children with Down’s Syndrome are often tested between the ages of 3 and 4 by being asked to match letters.
Your child would be given a card with five letters on it, and an examiner would stand a set distance away and hold up individual letters.
Your child should point to the matching letter he or she sees on the card with five.
The examiner will hold up letters in multiple sizes ranging from quite big to quite small in order to get a good idea of your child’s range of vision.
All of these tests can evaluate the eyes independently by the simple expedient of covering one eye, though babies in particular may not appreciate it.
When to test for eye problems in those with Down Syndrome
The schedule for eye checkups starts at birth with checking for cataracts and then again at six weeks.
Other problems are usually not tested in newborns or infants because almost all children have vision problems at birth.
Most children outgrow these problems as they develop, but for some reason children with Down’s Syndrome tend to keep more of theirs. It seems as though their eyes don’t develop as fast or as thoroughly as other children.
Between the ages of six weeks and eighteen months your pediatrician should pay attention to vision along with everything else.
If your pediatrician has any concerns about your child’s vision, he or she will probably refer you to one of the eye specialists named above.
Each and every child with Down’s Syndrome should have a full formal visual/ocular screening and assessment performed between eighteen months and two years.
They should also have this screening performed again every two years throughout their entire lives in order to monitor for developing problems.
Most Common Eye Problems and Treatments
Approximately 20% of children with Down’s Syndrome develop strabismus, more commonly known as squinting.
Strabismus is specifically defined as one or both eyes pointing in slightly different directions.
Three different variations are possible, with one eye turning in, one eye turning out, or both eyes misaligning somehow.
Strabismus manifests quite differently for individual children.
Some squints happen from time to time, others are constantly there.
Some children alternate which eye they squint, others stick with one or the other all the time.
The reason the child squints is because when one eye moves out of bifocal alignment, the picture created in the brain is fuzzy and hard to understand. In order to resolve the problem, the vision in one eye is suppressed. If one eye is constantly suppressed in this fashion, vision tends to deteriorate in that eye.
Many kids squint because they have long sight or short sight.
Glasses can help to correct both.
Children who have one eye turned in towards the nose have long sight. If the child is given corrective glasses, the squint often becomes less noticeable or even vanishes completely over time.
Children with short sight or who will develop short sight later in life tend to have one eye that rolls to the outside towards the edge of the face. Again, this is often helped by glasses to correct the vision problem. Frequently it can be controlled and even show improvement with work and time.
It can be more difficult for doctors to notice a squint in children with Down’s Syndrome because of the distinctive shape of the child’s eyes. Because of this problem with diagnosis, the guidelines for treating children with Down’s Syndrome emphasize additional routine vision screening in order to catch and treat the problem as soon as possible.
Should the screening find that one eye has more vision than the other, a frequent treatment method is to cover up the strong eye for a set period of time each day. This stimulates the weaker eye into having to work and often makes the eyes balance out.
If your child still has a really noticeable squint even after glasses and muscle work, eye surgery is a corrective option.
During this surgical procedure, the small muscles that control the movement of the eyeball are adjusted to pull the eye closer towards alignment. If your child has congential heart problems, you’ll need to check with your child’s cardiologist before allowing him or her to undergo eye surgery. The cardiologist will probably tell you to go ahead, but may have recommendations for the surgeon.
Remember to keep all of your child’s specialists in the loop.
Hypermetropia, AKA Long Sight
About 40% of school age children with Down’s Syndrome have long sight.
This vision problem is often associated with a convergent squint as discussed above.
A child with long sight has to use extra focus in order to focus his or her eyes properly, and trying to see something close up is even more of a problem. If one eye shows a lot more long sightedness than the other, the vision in that eye may be reduced.
This problem is also known as “lazy eye” and may require treatment from an orthoptist as above.
Myopia or Short Sight
Right around 14% of school aged children with Down’s Syndrome suffer from short sight, and the problem grows even more prevalent as children approach adolescence.
These children can often see things near them just fine, but have problems seeing things that are far away.
Corrective glasses are usually the preferred therapy.
While short sight probably won’t be cured, glasses both fix the basic vision problem and can often help with weak or wandering eyes.
Astigmatism is a condition where the visual image transmitted to the brain is painfully fuzzy because one eye’s focus level is different from the others.
Astigmatism can happen when only one eye of the pair is long or short sighted.
In particularly unfortunate cases, it can also occur when one eye is long sighted and the other is short sighted.
About 30% of school aged children with Down’s Syndrome live with astigmatism.
Usually the best treatment for this is custom glasses with two different prescriptions in the lenses to make the focus of the eyes match up with each other.
Many children with Down’s Syndrome have problems focusing on things that are near them whether they’re long-sighted, short-sighted or don’t need glasses at all.
This problem with focussing on nearby things often persists even if the child is wearing glasses.
We don’t yet know why focussing on nearby things is often such a problem to children with Down’s Syndrome.
One theory is that their visual systems don’t register and zoom in on blur as well as the visual systems of people without the disorder.
Another possibility is that the eyes don’t coordinate very well and the neurons that tell the eyes to focus don’t get the combined feedback required.
Both of these theories are currently being researched.
Children with this problem often benefit from bifocals so much that they actively prefer wearing them everywhere.
Right around 10% of children with Down’s Syndrome exhibit nystagmus, which is a condition in which the eyes make small, involuntary, jerky movements.
These small eye movements are most often noticeable when the child is looking sideways.
On occasion a particular head or eye position that makes the movements almost stop.
If you find this to be true in your case, you could encourage your child to stay in that position whenever he or she needs to see something.
These children will often discover and use that particular head or eye position on their own as it’s easier to see that way.
People with nystagmus often see things that are near more easily than things that are far away.
They’ll often read better if they can hold their books very close to them.
In order to help this particular problem you’ll need to work closely with your eye specialists, your pediatrician and your child’s educators.
Eye Infections and Watering Eyes
People with Down’s Syndrome often suffer from eye infections and watering eyes more frequently than people without.
This is mostly due to the unique eye shape and position commonly seen in people with Down’s Syndrome.
Under normal circumstances tears form continuously, lubricate and moisturize the eye, and drain down the naso-lacrimal duct found in the corner of the eye. This tube connects the eye with the back of the nose.
People with Down’s Syndrome often have a very narrow naso-lacrimal duct that gets blocked often.
If blocked, tears can’t drain down it and instead come out of the front of the eye, leading to watering eyes.
In addition, because clean tears aren’t effectively getting through the entire system, infectious bacteria have a much easier time getting in.
If an eye infection happens, the eye will usually need to be treated with antibiotic eye drops during the day and antibiotic eye ointment at night.
However, if the eye is sticky but the telltale signs of infection aren’t yet present, you can bathe the eyes with cool, previously boiled water in the morning and evening.
The biggest sign of eye infection is a yellow or green discharge from the eye itself.
Children will often grow out of this problem as they get bigger and the naso-lacrimal duct gets wider.
If they still suffer from a lot of eye infections after getting to their first birthday, a doctor may have to perform a minor surgical procedure called a syringe and probe. Basically, the child is placed under general anesthesia to avoid distressing him or her as much as possible. The doctor then passes a syringe down the tear duct in order to clear the blockage. A dye is often used afterward to check that the duct is completely clear. While your child may have to undergo general anesthesia, you’ll generally get to go home the same day.
Another eye problem common in children with Down’s Syndrome is called blepharitis.
Fortunately, it sounds a lot more frightening than it really is.
Children with Down’s Syndrome often have notoriously dry skin, and if they don’t have enough skin oils then the skin around the eyelashes becomes flaky and irritated.
This is usually somewhere between uncomfortable and painful, so should be avoided if possible.
Medical procedures and medications are often not necessary, as the problem frequently clears up by bathing the eyelids with plain, cool water that’s been boiled to purify it.
Adding a teaspoon of baking soda to each pint of water is often quite soothing.
In the case of severe problems you can add a similar amount of baby shampoo to the water in order to really clean the eyelid off well. Always use baby shampoo, never regular or it will sting the eyes too much.
If your child suffers from this, cleaning his or her eyelids regularly reduces the inflammation and reduces the risk of developing an infection.
A cataract is defined as a condition in which all or part of the lens of the eye has become cloudy.
If only a tiny portion of the lens is cloudy, it’s often possible for the person to see around it. Cataracts of this small kind are fairly common in people with Down’s Syndrome and often don’t cause major problems.
The problem comes if your child develops a dense cataract. Fortunately, dense cataracts are only seen in about 1% of the population with Down’s Syndrome, but that’s no help if your child happens to be in that one percent.
Dense cataracts are either more opaque than normal or they cover more of the center of the lens. In particularly severe cases, a cataract may do both.
Both kinds of cataracts can be present at birth or develop somewhere along the line, and both are easy to detect during routine checks.
Dense cataracts are usually treated by removing the lens of the eye in a full surgical theater.
Older people who have cataract surgery often have an artificial lens put in at the time of the surgery.
Children, on the other hand, can’t have artificial lenses implanted until the eyes are done growing, so a child’s cataract surgery will be done in such a way as insertion of an artificial lens will be possible in adulthood.
Until their eyes are done growing, these kids often have to wear thick glasses or contact lenses. Thick glasses that fit well are often easier to deal with, especially in the case of young children.
The cornea of the eye is normally a curved, clear structure covering the front of the eye.
You can usually see it clearly yourself by looking at someone’s profile while he or she is looking straight ahead.
It’s easier if there’s a light behind the head.
When you look from this angle, you can see that the iris is flat and there is a clear piece of eye tissue curving outwards, which is the cornea.
Keratoconus is an eye condition that causes the cornea to grow malformed.
Instead of curving cleanly in an arc, it grows as a cone.
During the early stages of keratoconus, the biggest problems usually caused are short-sightedness and possible astigmatism, and many cases don’t get any worse.
However, if the problem progresses then corneal scars can develop in the center of the pupil.
A small number of people with keratoconus suffer such major cornea thinning that they require a corneal graft, which leaves the eye extremely vulnerable until healed completely.
If a person with Down’s Syndrome has to have a corneal graft, he or she must usually be watched closely to make sure that the eye in question gets left strictly alone.
Fortunately, keratoconus is extremely rare in childhood, but it can start to develop at any time.
Approximately 10% to 15% of adults with Down’s Syndrome suffer from keratoconus, but the vast majority of them only have the mildest version.
The possibility of developing keratoconus is one of the major reasons why people with Down’s Syndrome should have vision screenings every two years for life.
Infantile glaucoma is one of the most severe conditions that is known to affect children with Down’s Syndrome, and it can develop at any time during the first three years of life.
Fortunately, it is extremely rare, but children with Down’s Syndrome tend to get it slightly more often than children without.
This form of glaucoma is one of the problems that newborns are tested for, as early and appropriate surgery can save most or all of the child’s vision.
Infantile glaucoma happens because the drainage system for the eye doesn’t develop properly. This leads to pressure from fluid building up within the eye, and does permanent damage to the optic nerve itself.
The symptoms include enlarged eyes, excessive eye-watering, corneal cloudiness, and visible sensitivity to light.
It’s usually treated with either pharmaceuticals or with surgery.
The medications that can help come as eye drops and oral medicine, and these drugs help fluid exit the eye or decrease the production of fluid within the eye.
Surgery also comes in two varieties, a filtering procedure and laser surgery.
A surgery for filtering uses tiny surgical tools to manually create a drainage canal within the tissue of the eye, while laser surgery uses a laser scalpel to make a small opening directly. Laser surgery is usually preferred, but filtering surgery is performed when lasers don’t work.
Glaucoma treatment can’t repair optic nerve damage that’s already occured but it can stop it from progressing, which is why early diagnosis and treatment is so important.
If your child needs glasses, it’s vital to get a pair that fit well and then teach your child to wear them.
The easiest way to teach is to do something enjoyable with your child, but insist that he or she must wear the glasses while doing the activity.
Enjoying movies together is often a good idea, as you’re right there to remind your child to wear the glasses, and he or she will quickly pick up on the fact that the movie is a lot more visible.
All children are curious and enjoy being able to see what’s going on around them.
If your child learns that glasses are comfortable and allow greater range of vision, pretty soon you’ll have a hard time getting them off.
I don’t recommend getting your child a pair of designer frames as kids tend to be pretty hard on glasses.
However, if your child’s at an age where social acceptance is particularly important, you may want to invest in frames that he or she likes and feels confident wearing.
Of course, use your child’s need for cool glasses mercilessly to get him or her to take care of them properly.
The biggest criteria for most children’s glasses is comfort.
If your child has to endure pinching, poking, prodding or headaches every time the glasses go on, you’ll soon be dealing with a child who has learned to avoid glasses.
For young or particularly active kids, a headband that will hold the glasses securely in place is often a good idea as well.
The point is to make wearing the glasses as painless, natural and thoughtless as possible.
Many of the eye problems affecting people with Down’s Syndrome don’t come with cures, only treatments that can manage the problem.
Fortunately, most of the problems that commonly occur don’t have to damage quality of life.
Those conditions that are serious are also, thankfully, very rare.
In addition, the medical community often has techniques that can halt serious problems if caught early enough.
Other vision problems are usually easily managed and, if treated well, do not offer any serious impediment to your child’s life or potential.
Research and Main write by Loni Ice, minor editing by Donald Urquhart