CHILD WITH KC

[casadomingo]

MY 12 YEAR OLD DAUGHTER HAS JUST BEEN DIAGNOSED WITH KC - SHE IS ALLREADY VERY SHORTSIGHTED -5 IN EACH EYE , HAS BEEN WEARING GLASSES SINCE SHE WAS 3 - HOW WILL THE KC AFFECT HER SIGHT,
P.S SHE ALSO HAS MODERATE MENTAL DISABILITY SO I CAN SEE PUTTING IN CONTACT LENSES IN FUTURE WILL BE A BIG PROBLEM.
HELP

[rosemary johnson]

Hallo casadomingo! Welcome to the forum - and welcome to the wonderful world of KC to you, your daughter and the rest of your family and friends.
I can't really say how the KC will affect your daughter - because we do vary so much. She may find it never gets much worse than now and getting fitted ith contact lenses sorts the problem out and she can cope with the lenses in future.
Or it may deteriorate quite a bit more.
You might like to look up "CXL" (a process also known as "CCL" and "C3R") on the home page of this site. It is a new treatment (new in the UK and still at the "trials" stage, though ore established in other countries) that aims to stabilise the KC so it does not deteriorate so much or so fast.
As regards contact lenses - they are actually lens of a problem to deal with than you might think at first, and I'm sure she will cope. If you'll excuse me mentioning this....... she's going to have to cope with periods, and if she can cope with those, she can learn to cope with lenses!
Two suggestions for learning to cope with lenses:
1. if the optometrist is quailing at the thought of trying to teach her to put lenses in herself, maybe you could get him/her to teach YOU to put them in for her? - then she can get used to them, find out how worthwhile they are (we hope!) and learn from you in her own time how to do them herself.
2. if she has trouble with keeping losing or breaking contact lenses because they are such tiny, fragile little things, ask if she can try scleral lenses. YOu'll both have a fit when you first see one - they are the size of a 2p piece! But some of us find them surprisingly comofrtable, and they are uch harder to lose, harder to break, don't blow out, flick out or wash out if she gets inthe shower with them in, and when she takes them out, she can just dry them on a tissue or clean handkerchief and store them inthe box dry, with no fluid-filled cases to leak.
Good luck! - and do keep us posted with how you get on.
Rosemary

[Andrew MacLean]

casadomingo

I have nothing really to add to Rosemary's post, but I did just want to say 'welcome' to the forum.

All the best. tell your daughter that she is not alone!

Andrew

[Anne Klepacz]

Welcome Casadomingo
You'll find lots of helpful information about keratoconus and people with learning disabilities on www.lookupinfo.org.uk There are various leaflets you can download from that site which explain very well how KC can affect the vision - though as Rosemary says, we are all different. And if you'd like some of the information we provide, such as our basic information booklet about KC and the DVD of last year's conference all you need to do is to e-mail me your postal address. You can either PM me, or e-mail me anne@keratoconus-group.org.uk
Anne

[Prue B]

My daughter is seven, with a wicked astigmatism, which we have been warned will probably develop into KC at about puberty. She got glasses at 4 and after 3 frames broke in 3 months I decided we would see about lenses. She has been wearing them for a little over a fortnight now. She wears Rigid Gas Permeable contact lenses. Blue in the Left Green in the right so we can tell them apart. She generally wears them for 10 hours plus most days, it is difficult to get to 12 when she is only out of bed about that long a day. They go in before we go to school and come out before the bath. On swimming lesson days wear time is a bit shorter. She is still getting used to them. She has learnt she can run in them, jump on the trampoline with them. She knows to wear sunglasses if it is dusty. She takes them out, she cleans them, I put them in. She can but she takes a long time. We only have time for her to do it on weekends. The first two days she wore them to school they "fell out" and she put them back in, but I know she really wanted to show her mates what they looked like. Once we got to her wearing them for a whole school time it got easier. I used to duck down to the school to get them out. We always have a little preformance when they go in, but she admits they feel better and she is seeing much better. Her teacher has even commented about her writing improving.
Her optometrist felt she would be easier to adjust to RGPs now than at 10-12, tomorrow we have her first check up. I think the right one may be a bit off. it tends to move about a bit, the left one seems perfect.
I tried to make it a positive experience. How brave she was, how clever, how amazing. We never told her they would not hurt. But she has been told they will hurt less as time goes on. She is proud of herself, and admits to seeing better. I have coaxed and handed tissues, but she has been made to persevere. If she says they hurt after and hour I distract, cause I know we can go longer now. I do however always check they are in a good position, sometimes the right one has dropped a bit and just needs to be pushed up a little. She is learning to do these things herself. We had one come off and adhere to the bottom of her sclera. We had tears, and we used lots of biotin tears and a bit of moving to get it out. the next morning they went in as usual. It has not happened since, now before she tries to get them out we check they are in a good spot first. It is not easy with kids, but with a lot of love, support and positive reinforcement it can be achieved, My daughter has not worn her specs for over a week now.