UK Keratoconus Self-Help and Support Association

Hello all,

I joined here a while back when my 18 year old son David was diagnosed with keratoconus last year. After much too-ing and fro-ing to our Eye Hospital he is fitted with lenses on April 13th. I have not posted much since joining mostly as the PC died and I am now on my elder sons lap top. I am having a really down time at the moment which is dreaful as it is not me with this condition. The thing is that as well as the keratoconus David also has autism and that is impacting on the condition. I have really tried to get this over to the hospital but so far they look at me as if I am stupid. It does not help as David is highly verbal and I know that they wonder why I am the one doing the talking. David wants it that way as he is often confused and even a simple yes or no answer can give him problems.

I suppose that until now I have tried to put the keratoconus on the back burner - maybe I have even been a bit in denial about this because the autism, I have another autistic son aged 9,the autism just takes over your life, with little time for anything else. Add this into the mix and it is a bit much to take on board. However take it on board I must and I know that I must now come to terms with this to help David all that I can.

I have been reading and am very worried that David may need the graft and how long would that last him? I know how long is a piece of string? But at 18 the future for him is long and I wont be here forever to help him. The autism is hard enough for him to cope with never mind this. He is also very down at the moment and as it gets nearer to his appointment he is very worried. His eye is also a yellow colour in the corner and this worries him although I have been told this morning that this could be down to drops that he is using to stop his eye from itching. Does anyone here have any insight in to this pleased.

They have only been able to put the lens in so far using drops to freeze his eyes. We are told that we will not be given those drops to take home. Even with the drops his eyes run all of the time and I fear that this is all a waste of time. They do not appear to grasp that if it is hard for most people times that by ten for David.

I am so sorry to moan but I am worried and intend to visit here now on a daily basis - to learn and if necessary ask questions.

thanks for reading

Carole

Carole

I wouldnt even attempt to say that I understand what you must be going through...as I think that would be more of an insult than anything!

However, a few things that spring to mind

a) how well can he see with his lenses, AND without his lenses

b) have they indicated to you how serious his KC is?

c) How does david cope with lenses right now? can he put them in etc?

Jay

So far he has not had any lenses to bring home. They have been fitting him and testing him at the hospital. He can not even get the lens in himself and they are going to teach me to do that - that's fine for now.

How well can he see - well until they have 'his' lens ready I suppose we will not know for sure. What I can say is that with the lens that they had last time he can now see the first four lines of the chart with the lens - and nothing without it not even with his glasses. I was frankly shocked.

They have said that his KC is advanced so I took that to me quite severe. All of this has taken place in the last 12 months believe it or not to it is been very rapid.

David is determined to give this his best shot but I don't know how long he will feel like this about it. He is very afraid. He lives for his PC and if his eyes go then I have no idea if he will cope.

thanks for responding

Carole

Carole

It does sadden me to read this position; in that here we have a patient which clearly requires additional coping support; yet this has not been taken into consideration.

When you say David cannot put them in; have they given him an opportunity to try? Or do you feel that this will be worthless?

There are other lens types that may be better suited; such as Sclerals for David; however alot is determined by what they have already tried in terms of lenses.....

I am assuming he needs lenses in both eyes?

J

Hi Carole

Having recently tied myself up in knots worrying about my daughters (neither of which have been diagnosed with KC so I really was getting ahead of myself) I'm perhaps not the best one to talk but I've found the only certain thing about KC is that nothing is certain.

Starting out with lenses is a nervous time for anyone. It's fifteen years since I last wore any so I'm well out of date with the day to day handling them but I do remember when I first got them of being really worried and nervous and soon losing those feelings as I got used to them and became more confident about the whole thing. Hopefully it will be the same for you and your son.

Carole

I know this is hard, but try to take all this one step at a time. that way problems tht may arise over the horizon will not overwhelm you today.

If you strt fretting now about things tht may get worse later, then you will find it much harder to deal with the things that need your attention now.

By the way, this is not easy advice to give; it had to be learned the hard way by one who tends to let his imagination run ahead of him. But I learned this as a coping strategy, and so far it has worked pretty well, except when I have relapsed into full on worry mode

Andrew

Carole,

I completely understand your worries as KC is enough of a problem without the autism as well. I have a relative who teaches autistic children so I am going to pm you to ask some questions and then I can discuss it her and see if we can come up with suggestions as to coping mechanisms and the best way to go about things.

Talking about grafting right now is worrying how to run before you can walk - lets get him sorted lens wise first yes? Once we have talked a bit, I can perhaps suggest some questions to put to the people you are seeing that might help you to plan for the future.

Talk soon

Lynn

from Ok to 4 lines of chart with lenses wihtin 12 months? - yup I'd say that's fast!

Lots of hugs, and best wishes to you both. Good luck at the next appointment.

DO you have something like a autism society in your area? - maybe someone there might be expierenced with your hospital and might give advice on negotiating the unhelpful NHS?

As for the PC - there are plenty of VIPs (vision-impaired people) who use computers, and work in IT jobs, using special software that either magnifies the screen, changes the colours, or reads out the screen contents, or sends the writing on the screen to a braille display. SO please don't despair about PC use - and if David is already a dab hand with a computer, I'm sure he'll find it a lot easier to learn how to use the talking/magnifying software with it, than someone who has to start with computers from scratch using speech output.
Rosemary

I have only met two autistic children and my friend and his wife adopted them.

I do not know what type of autism they have, but they have taught me this, autistic kids are extremely resilient and determined people just like KC people.

Carole, I wish you and your son all the best.

Thank you to all who have replied it does help.

Lynn my e-mail address is no longer the same as my PC died I am on my sons lap top at the moment. I have however now updated my profile and my new addy is there. It would be great if you could pm me again I would appreciate that.

I am aware that David could still use a PC if his eyes do fail him but he could not play his games and that is pretty much what he does on the PC to calm himself down. However as has been said one step at a time here.

I am the autism support in our Region - not much hope there then - and I am probably one of the most positive people I know, which is by no means self praise.The problem is I understand the autism and pretty much know what to expect and can pass on my knowledge and support. This is new to me and although I realised from the off that it was pretty serious I did not expect this to proceed as rapidly as it has done to date.

I have added this group to David's favourites and told him to take a look - he tends not to want to know but he may just check this group out at some point.

Carole