UK Keratoconus Self-Help and Support Association

Hello my 13 year old son has been diagnosed with kera. in both eyes. He has had lots of test to rule our other problems, results on Monday. He has been fitted with contacts but can not keep them in his eyes or see any better with them. The person he is under at the hospital seems to be getting frustrated with my son and keeps insinuating that he can see better than he is testing / saying!! I don't know why on earth she thinks that anyone would do this. I have noticed that he can see much better in natural daylight, so I asked her why do you always test his eyes in the dark. Only answer because letters are lit up on test board! on Monday I'm going to ask them to test his eyes in daylight. Can anyone please advise?
Sorry if not correct forum, first day today.
Thanks
Jenny

Jenny

Yes, this is the correct forum; you could also have posted in 'General Discussion Forum'.

Anyway, first things second: welcome to the forum. I am sure we all feel for your son; it is hard enough to be 13 in the modern world without being told that you have an eye condition.

Second things third: DON'T PANIC.

Third things fourth: Is your son building up his attempted wear time for his lenses? I was originally advised to wear my lenses for an hour the first day, and hour and a half the second day, two hours on day three ... ... And so on until I reached the target of 8 hours per day. I am sure that we can all well understand why he finds his lenses uncomfortable.

I am sorry that you have the impression that the optometrist at the hospital thinks your son has better sight than he is letting on; are you with your son when his sight is being tested? If not, I'd ask to be present so that you can challenge any such suggestion, and ask why it is being made.

There is no doubt that Keratoconus is a condition that we would all prefer to be without, yet there is equally no doubt that people can learn to live with the condition.

Finally (for now) I am moving your post the General Discussion Forum because I think it is likely to attract more responses there. I shall leave a shadow topic in the Children and Teenagers section.

All the best

Andrew

Hi Jenny and welcome
Seeing better in natural daylight is a feature of keratoconus. But your son really needs something that will enable him to see well in all lighting conditions, so I'm not sure you'd gain anything by having his sight tested in daylight. Contact lenses usually significantly improve the vision of people with KC. Without that incentive, I'm not sure anybody would persevere with trying to get used to wearing them, let alone a 13 year old! KC eyes are often not easy to fit, and the first pair of lenses aren't always the right prescription or fit. So it does sound as though the lenses need to be adjusted, or maybe a different kind of lens would work better for him. If you'd like our basic information booklet about keratoconus, and the DVD of our last conference which included a talk about all the different contact lens options for KC, do e-mail me anne@keratoconus-group.org.uk with your postal address and I'll send them to you. I don't know whereabouts in the country you are, but we do also organise meetings in various locations - you'd be very welcome to come if you're near any of them.
All the best
Anne

Hi When he had a contact lens fitting at the hospital they did an eye test to measure improvement, but there wasn't any. I don't know if it was due to the fact that it had taken a long time to fit them and his eyes were sore or ?? but she refused to release them. He was then sent to another hospital to see a specialist, who then sent him to another hospital for further test to rule out other problems. We are back at hospital on Monday for the results. She has phoned me to say nothing to worry about and that on Monday she will try contacts again. Previously she tried very small contacts which would not stay in. Then she had some larger one's made saying that my son has got very big eyes,(which he has beautiful blue one's) but again they kept falling out. Hopefully she will let us bring the contacts home to use and get used to like you said. She said that the fitting problem is due to trying to fit a round contact on to the cone shape of his eyes, why don't they make cone shaped contacts to fit. He had glasses for first 2 months which were fine but then became to blurry. I asked about more glasses but she said contacts would be better.
He has always been sensitive to bright sun light, I wonder if a tinted pair of glasses would be better?

Thanks for your help.
Jenny

People with keratoconus are notoriously difficult to fit with contact lenses.

From what you say, the hospital has never tried your son with a scleral. this is a rather large lens that sits on the white part of the eye and vaults over the cornea.

Tell your son that we are all with him!

Andrew

Hallo! Welcome from me too and sorry to hear of your son's problems.
I lens fitter getting visibly frustrated and insinuating your son isn't being straight-up is NOT what you want from the NHS! - and is not what you've being paying your stamp for, I@m sure.
If you hear this, I'd really suggest biting the bullet and calling her on it: "Excuse me! Are you calling my son a liar?"
It can take several goes to get a lens to fit - quite a lot of goes in some cases. And no, they probably wouldn't send you home with one where they hadn't got the fit right yet (nor with one he can't put in and take out - or if absolutely necessary, that you can't put in and take out for him, as my mum had to do with my first set).
I remember all too well being sent off to diferent hospitals for more special tests on different specialist machines. More time off school and more sitting round for hours in dark gloomy waiting rooms.
It seems all too common for people doing eye testing to have dark rooms with no natural light. I think the reason is, some tests for certain conditions they need a dark-ish room (for example tests about whether one can see flashing lights in the peripheral vision). SO I think they make the rooms for that. I guess also, it is of help to the optician doing the testing when they are peering into your eyes with those little bright-light gadgets.
Doesn't help some of us who don't seem to o well inthe gloom, though!
What's even more of a concern: it's quite common for people with KC to see "haloes" or "steraks" around lights, and/or to see multiple copies of what we're looking at particularly lit-up things. SO having a lit-up Snellen chart (that's the jargon term for that board with all the letters on, named after a Mr(?) Snellen who first thought of it)
Having a Snellen chart with the background lit up, making multiple copies of itself,a nd causing streaks and haloes around the bright background - and no doubt streaking and haloing all over the dark letters - is not giving a person with KC the best chance of reading as much as they could on a non-lit-up Snellen chart in a room with good daylight.
I do remember hearing a few years ago there had been some discussion amongst optometrists about this - the difference between reading a self-illuminated Snellen chart and one that was lit from ambient light and not itself light-emitting.
Never heard what outcome, if any, there was to this. Maybe one of our optom members can commetn onthis?
Rosemary

I have also had issues with the way vision is tested by optometrists and especially with night vision. although my eyes (corrected) were legal for driving- i did not feel comfortable driving at night, as the vision was so dramatically worse...
Tell your son he has our support and that there are many options for lenses- one of which will work for his eyes.

BIG Thank You to Everyone for replying to my email and for your support. We are back at hospital on Monday for results of tests and if she calls my son a liar re his vision, she might have to take her glasses off so I can punch her on the nose lol only joking.Take care Jenny (Mom) & Jaydon (Son)x

Jenny and Jaydon

All the best on Monday: do let us know how you get on.

Andrew

Best of luck at the hospital from me too!
Rosemary