They can't remove the lens with the cataract? Bummer. Even if they can't do an implant, glasses are better than cloudy.

Agreed on the testing! Something like 1/4 of kids with reading problems have undiagnosed eye problems -- things that a family doctor might miss, but an optometrist will catch in 15 minutes of playing with the kid. (Optometrist in Canada: not MD, can't prescribe meds, but has all the tools and training to get a good look in the eye, then writes prescription for glasses.) Seriously -- the basic tests are all geared to the kids' abilities. My kids' first test was at six months -- she played with them while I took my coat of and watched how their eyes moved.

My brother had perfect vision, then in six months -- yes, six months, the doctor was clutching at straws recommending we go back for another eye test so soon -- it got so bad he got migraines bad enough to throw up.

Our insurance agent had his arm go numb, doctors were stymied; his optometrist correctly diagnosed a brain tumour at his routine checkup. (I don't think much of his other doctors for missing it, but it shows how much stuff optometrists know that we don't realize.) (He had the tumour removed a decade ago and is doing great.)

So, yes, get thee, all of thee, to the eye specialist!

Being an old auntie here, but how about your hearing? Develops in the womb at the same time vision does, and they're physically close, so if one's out of kilter there's a good chance the other is.

An audiologist can tell a lot more than a regular doctor -- she's got better equipment. Trust me -- after Cracker's early speech delay, I've heard a lot of horror stories which could have been prevented if the family doctor had realized how little he can tell in his office.

It's not just how you hear at the test, but the overall health of the system and how it changes over time. (Both kids and I go every two years thanks to genetics. So far, so good.) And hearing is something that fades even more subtly than vision.

Get in contact with your local version of the Canadian National Institute for the Blind. 9/10 of their clients are partially sighted. A lot of the compensation skills are easier to learn now, and they've got good deals on equipment. Also lots of helpful people who've been there. Even if you end up not needing their help, I'm sure they'd appreciate yours!

Hope things go well for you,

Cricket

__________________
Between stimulus and response there is a space.
In that space is our power to choose our response.
In our response lies our growth and our freedom.

- Viktor E. Frankl

Hope things can be found out, even if they say it can't.

Site is a precious thing. My friend is mostly blind but has found ways of keeping in touch on the internet.

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" No gratitude needs to be voiced, your mind speaks to us!"


Racer by day, Feather Thrower all the time!

http://www.nystagmus.co.uk/#Research_Update
There's reasearch going on at Leicester Uni into nystagmus and they're looking into ways to try to improve it. Not too far from Walsall...

Do you mean aniridia? Aniridia does apparently carry an increased chance of cataracts - maybe due to the increased light getting into the eye damaging the lens? Aniridia means you have missing or partially missing irises, and it carries with it all kinds of complications such as increased risk of glaucoma as well as cataracts. It's a real shame yours can't be operated on.

I have regular eye tests as my eyesight is very bad - I caught measles when I was 7 which left my eyeballs distorted. At least I get my eye tests free too The government also gives me a princely £12.70 towards new glasses each time I buy a new pair.

Last time I got tested I saw a new optician who puffed air into my eyes to check the pressure - never had that done before! I'd only ever seen anything like it on an old Hart to Hart like, 20 years ago. Someone had implanted a blade into the bit of the machine that the puff of air came out of, so as to permanently blind Mr Hart, so I was a bit flinchy about that test!

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Mallanox : "My mother was Irish and my father was an alien. I was an only child and I dress funny."

NYSTAGMUS

Nystagmus is an uncontrolled movement of the eyes, usually from side to side, but sometimes the eyes swing up and down or even in a circular movement. Most people with nystagmus have vision which is worse than average. Nystagmus that appears in the first months of life is called early onset nystagmus or congenital nystagmus.

Nystagmus in early childhood may be caused by a defect in the eye or the visual pathway from the eye to the brain. It occurs in a wide range of eye disorders of childhood such as cataract, glaucoma, some disorders of the retina and albinism (see Related eye conditions below). Many children with nystagmus do not have eye, brain or other health problems. In this case the condition is called congenital idiopathic nystagmus or idiopathic nystagmus, meaning that the condition starts very early on in life and the cause is unknown.

Several types of nystagmus can be inherited. To find out the chances of someone passing on nystagmus to the next generation, a specialist must first make an accurate diagnosis of the underlying condition. A clinical geneticist can provide detailed information. Your eye specialist will be able to refer you to one.

Acquired nystagmus, which develops later in life, may be a symptom of another condition such as stroke, multiple sclerosis or even a blow to the head. There are many causes. Nystagmus is not infectious or contagious. Because nystagmus may be the first sign of serious disorder of the eye or the brain, it is vital that when nystagmus first develops the child or adult is referred to an ophthalmologist (eye specialist) or a neurologist. Nystagmus is believed to affect around 1 in 1,000 individuals.

Nystagmus affects people in many ways and the effects vary from person to person. In all cases, the vision will be blurred. Here are some of the ways the condition can affect people.

1) Most people who have had the condition since childhood are not affected by a constantly moving image (known as oscillopsia), as their brain adapts to the movement of the eyes. However, people who acquire nystagmus later in life are unlikely to adjust so well and will be affected much more by oscillopsia.

2) Nystagmus is often associated with reduced sight. The degree of sight loss varies from mild to very poor vision and is related to the underlying condition. Many people with the condition are eligible to be registered partially sighted or blind.

3) Please note that very few people who are registered are totally blind. Most have very poor vision.

4) Vision varies during the day and is likely to be affected by emotional and physical factors such as stress, tiredness, nervousness or unfamiliar surroundings. People with nystagmus may tire more easily than other people because of the extra effort involved in looking at things.

5) Many people with nystagmus can read very small print if it is close enough to their eyes. Some find a visual aid such as a magnifier helpful. However, large print material should always be made available and all written matter should be clear. It is very difficult to share a book because it will probably be too far away or at the wrong angle.

6) People with nystagmus may be slow readers because of the extra time needed to scan. This should not be taken as a sign of poor reading ability, but students or school children with nystagmus may need extra time studying and when sitting exams.

7) Many people with nystagmus use computers, as they can position screens to suit their own needs and adjust brightness, character size, and so on. However, some people find it difficult to read computer screens for more than a few minutes. Experimenting with different colour combinations and using large screens may help.

8 The angle of vision is important. Many people with the condition have a null point where the eye movement is reduced and the vision is improved. They will often turn their head to one side to make the best use of their vision. Sitting to one side of a screen or blackboard often helps. Children with nystagmus should be allowed to adopt the head posture which gives them best vision.

9) Uncontrolled head nodding helps concentration probably because the head movement compensates somewhat for the eye movement.

10) Depth perception is usually considerably reduced. This may sometimes make people seem a little slower or clumsier than normal.

11) Balance may be affected, possibly because of poor depth perception, which may make it difficult to use stairs or cross uneven surfaces. (Aint the beer then)

12) Confidence may be reduced because of poor vision and maintaining eye contact may be difficult.

13) Getting about can also be affected, especially in unfamiliar and busy surroundings such as supermarkets, railway stations and airports. Crossing roads is more difficult too. Orientation (knowing where you are) and mobility (moving from place to place safely) training can help (or stop drinking too much). Very few people with nystagmus are legally able to drive a car.

Nystagmus cannot be cured but there are several treatments which can help. Glasses and contact lenses do not correct nystagmus although they may help a little and should certainly be worn to correct other sight problems. A child or adult may be diagnosed as being short sighted or long sighted as well as having nystagmus. Long or short sightedness occurs because the eye itself is not exactly the right shape for focusing. The focusing problems can be corrected with glasses or contact lenses, but the nystagmus will still affect the person's eyesight. Being long sighted does not mean that someone with nystagmus has good distance vision. Ask your ophthalmologist or optician to explain more.

Very occasionally, surgery is performed to alter the position of the muscles, which move the eye. The purpose of this is to reduce the amount the head has to turn to try and see better.

Researchers have explored ways of trying to reduce the nystagmus by making the patient aware of the eye movement and encouraging them to control it. These techniques rely on visual and audio signals (known as biofeedback) to the patient. For example, the patient might listen to an electronic signal, which goes higher when the eye movement is greater. Some people have said that they benefit from this type of treatment. However, the evidence is not conclusive and many of questions remain unanswered such as: Do these techniques bring about a real improvement in vision and do the possible effects last?
Nystagmus is not painful and does not lead to total blindness. Vision tends to improve until it stabilises around the age of five or six. Giving children plenty of stimulation in the early years does seem to help them make best use of the vision they have. Toys which encourage the child to follow a moving object, such as marbles or train sets, are helpful. So are games which are designed to develop hand-to-eye coordination.

It is not possible to say which type of school is best for the child with nystagmus - each child has his / her special requirements. However, most children with nystagmus go to mainstream schools. Many go on to college and most adults lead fulfilled, independent lives.

Much can be done to reduce the effects of nystagmus and make sure that people with the condition have the same access to the same opportunities as fully sighted people. Accurate information and support, during the early years in particular, can and do make a big difference. In the worst cases, without a clear explanation of the effects of nystagmus, some children are mistakenly thought to have learning difficulties. This means that the real problems caused by their poor vision are not addressed. With the support of teachers trained in visual impairment, an understanding school and the help of parents, most of the difficulties presented by nystagmus can be overcome.

RELATED EYE CONDITIONS

ALBINISM

Albinism is the name given to a group of inherited conditions in which there is a lack of pigmentation (colour) in the eyes and usually in the skin and hair as well. This causes most people with albinism to have a very fair, almost white, appearance, although in some people albinism affects the eyes only. People with albinism find their greatest problems arise on sunny days and in brightly lit environments. Virtually everyone with albinism has nystagmus.

CONE DYSTROPHY

Cone dystrophy is an impairment to vision which can be caused by any one of a number of eye disorders. These disorders may or may not be inherited. Some dystrophies appear later in life, sometimes as late as 50. Other types may appear in early childhood or even be present at birth. Cone dystrophy may cause problems with seeing in bright light, seeing detail and seeing colours.

CHILDHOOD (OR JUVENILE) CATARACT

Cataract is a clouding of the lens of the eye which causes sight to become blurred or dim, because light cannot pass through to the back of the eye. Not all cataracts impair sight so badly that an operation is required. Some babies are born with cataracts and some develop them later in childhood. Childhood cataract may be inherited or may be caused by injury or illness. However, in some cases the cause cannot be identified.

Who can I contact for further information?

Nystagmus Network

13 Tinsley Close
Claypole
Newark
Nottinghamshire
NG23 5BS

Email: mail@nystagmusnet.org

The Nystagmus Network was set up in the mid-1980s and has over 800 members. The two main aims of this national self-help group are to support all those affected by nystagmus and to encourage the search for a treatment and a cure. Services include a telephone helpline, meetings, talks, booklets and a range of information leaflets.

Royal College of Ophthalmologists

17 Cornwall Terrace
London
NW1 4QW

Tel: 020 7935 0702

__________________
Eagle in Residence
Tempory Frisker

Last night, I saw a programme on Channel 5 about a 14 year old American lad called Ben who is the real Daredevil by using a built in sonar to see sound.

It was amazing. Basically he had cancer in his eyes which could have spread to his brain and killed him. His mum chose to have his eyes taken out which meant he was totally without sight.

Some time later, they discovered that somehow, he could sense his surroundings just by listening to the way that sound would bounce back from objects, like cars, buildings, etc. then he started to click, similarly to dolphins, to create his own sonar system. His clicking hits off a surface, for example a car, then the osund bounces back to him and he can tell that there is an object is there.

He walks around like a person with sight does and it amazing that he does this. He never used a white stick or guide dog, which in the programme he absoutly ruses to use a white stick as he thinks that it's more of a handicap and thinks that his built in sonar is perfect.

He met a blind bloke who taught him differently after a couple of disasters walking around a park and both played (rather dangerously) blind mans bluff in the middle of the road.

At the end of the programe, you see these 2 lads and coupel of other blind people taking a nature walk and Ben was starting to use a white stick to show him where stuff like holes, rocks, etc that his sonar skill can't work on and he started to realise that it isn't a handicap but a tool to help him to get around more safely.

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Eagle in Residence
Tempory Frisker

Yuck.

Sounds like you've done your research, and won't be one of those who give up simply because one expert is behind the times or it all sounds too overwhelming. It isn't all-or-nothing.

Silver lining? When I was a kid they used to put drops in our eyes to enlarge the pupil so they could see in; we'd go as a family, Dad would go in first, and wear sunglasses driving home, even if it were cloudy. They don't do it routinely any more, so I think they've got a better magnifier to see in properly. Those drops stung!

__________________
Between stimulus and response there is a space.
In that space is our power to choose our response.
In our response lies our growth and our freedom.

- Viktor E. Frankl