My 16yr old has been diagnosed

[sarah b]

Hi everyone,

Just looking for as much information as possible, my son was diagnosed as having keratoconus today!! He was referred to the hospital by our optician, and we went the hospital this morning for a check up and came out in a bit of a daze. He doesn't wear glasses at the moment, and we ve got an appt at the hospital 12 months from now. Just wondering how worried we should be at the moment, should we think about treatment? Guess we ll just have to keep reading and learning for now. He has got it in both eyes but the right one is the worse. Any help would be grateful.

[rosemary johnson]

Sarah, hallo and welcome to the forum.
I'm so sorry to hear you've just had a rather nasty shock! - you and your son.
I think you are quite right - keep reading and researching. there is lots of info onthe home page of this site.
Also, the KC group has various fact sheets about KC, and about studying and working with KC, for schools, colleges and employers.
They can be downloaded, or else sent on paper. If you send a PM (private message) to Anne Klepacz, our illustrious chairperson, I'm sure she'll arrange this - and send you the group newsletters.
If the hospital don't want to see you for another year, they don't sound too concerned.
What now? - do you go ack to the optician and see about glasses?
There is a treatment called CXL (or sometimes C3R) - there's more info about this on the site too. It is still at the experimental stage, and only available via the NHS to people who can get enlisted into clinical trials (which generally means they must be 18+). This doesn't cure the KC; it aims to slow down or halt its progress.
Trials seem to show that people who've had CXL find their KC fairly stable. But it's still fairly new, so there's no data older than about 11 years as to how long the effects last.
Also, many people's KC never advances beyond a fairly mild stage anyway.
The people you see as regulars here are generally those with the more advanced KC and the more problems with it - and people like you who've jsut been diagnosed, or had a friend or relative jsut diagnosed, and are finding out what this strange thing is. Most people, once they've got over the shock (!) get themselves fitted up with specs or contact lenses, get on OK withthem and get on with their lives OK, so don't see too much point hanging around here.
ROsemary

[Andrew MacLean]

Hey Sarah, welcome to the forum. I am so sorry to hear that your son has this diagnosis; it seems a lot to take in all at one time.

My son also has keratoconus, but having it myself has meant that I have had an idea of what he is likely to face.

A good place to start is with the group's factsheets:

http://www.keratoconus-group.org.uk/sit ... tions.html

Is your son still at school? if so he might like to take the factsheet to his head teacher. The school ought to know that he is living with an eye condition that may need some adjustments to their provision for him.

All the best

Andrew

[GarethB]

Another good starting point is registering your details with the group at Contact Us.

Anne will send out a wealth of information, some of which isn't available for down load such as the confrence notes and DVD of confrences. They contain some good information of the treatment options including the newer ones and you get the chance to hear how different people have coped with the condition. You'll also go onto the mailing list for the regular news letters and get invites to support group meetings (if there is one near you) so you have a chance to sit down over a cuppa and share experiences.

[Anne Klepacz]

Hi Sarah
Just to confirm what others have said - if you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our basic information booklet about KC and the DVD of the 2007 conference. It does sound as though your son's KC is mild at the moment if he doesn't need glasses or contact lenses, and of course, it may stay that way. But it's good that the hospital will be monitoring any changes.
Anne

[Lynn White]

Hi Sarah

As an optometrist, I can answer some of the questions you may now be thinking of that you didn't ask while you were there. Shock does that to you!

One thing to do is to go back to the optician who referred him and get more information such as his standard of vision, whether this can be improved with glasses or standard soft contact lenses and so on. Your optician may well have held back on any of this until he got diagnosis confirmed.

Lynn

[sarah b]

Thank you all for kind replies, I m still trying to read as much as poosible, been busy over the weekend so not read much. Our main question is should we be looking into cross linking, or should we wait a year til we go back to the hospital when we ll know more on whether its progressed quickly or not? The only questions I asked after we d been told was "would he need more regular eye tests?" which I was told no, yearly is fine, and "as hes going to be 17 soon can he learn to drive" which i was told yeh at the moment. Didn t feel I could ask questions on something we knew nothing about!

I think we will make an appt to go back to our optician, my son doesn't wear glasses or contacts at the moment, at our last appt he said that as the left eye was strong, that was compensating for the right eye. We now think he did guess what was wrong with his eyes. My son has always had regular tests, but recently we changed to a different optician, and he spotted something and asked us to come back in 6 months, when we were then referred to the local hospital.

Thanks again.

Sarah

[Andrew MacLean]

Sarah

Is the optometrist someone to whom the hospital based eye doctor has referred your son?

My reason for asking what may seem a foolish question is that when I was diagnosed, and when my own son was diagnosed more recently, the condition was first noticed by a high street optometrist (optician), and the diagnosis was confirmed by a hospital based ophthalmologist.

In both my own case and my son's, this diagnosis was followed by a referral to a hospital optometrist who measured our sight and dispensed contact lenses as required.

Why not ask them about crosslinking and other new therapies and managements for the condition?

All the best

Andrew

[sarah b]

No the condition was noticed by a high street optician who referred us the our local hospital and he has just told us he ll send for us in a years time! But we are thinking of going back to the original optician. Thanks for the reply about the eye drops. When i saw him rubbing his eyes I did tell him to stop!! Will look in the chemist for something later. We re off to our doctor for something else and was going to ask him!

[rosemary johnson]

Hi.
If your son is still coping without either contacts or specs so far, his condition is clearly not yet very severe. SO it's likely you have time on your side, at least.
Of course, if the condition suddenly starts to accelerate and he finds his vision going downhill rapidly, another trip tot he optician and probably hospital asap would be called for.
At present, CXL is only available onthe NHS by being enrolled onto a clinical trial - and AIUI, they don't enrol "Minors", ie. people under 18. SO you've a year and more to go. We all hope CXL will get beyond the trials stage and become generally available soon - so by the time he'd be allowed onto a trial, it may be available anyway.
Whether you could get it done privately at 16 you'd have to ask the clinics ... along with the price....
Of course, reading up on the subject so you can ask questions from a position o fknowledge is not a bad idea!
The trouble with trying to go for CXL as soon as possible is, if the KC isn't advancing, and may never advance much more, you - or rather, he - has gone through all that disruption (it takes about 6 months for the eyesight to settle down again), possibly pain, stress of the treatment, possible risks - and what it is intended to prevent may never have happened.
Of course, if the condition starts accelerating rapidly, that would be a different situation.
Rosemary