UK Keratoconus Self-Help and Support Association

Hi All,

Am I glad I found this site. I'm almost at the end of my tether.

I have a 12 year old who has been diagonised with KC. Currently it's severe in his left eye and we have been prescribed contacts, left is a must but have been advise to have one for the right eye as well althought we've not yet got lens that lens yet - that's a delight we're looking forward to on Wedesday - not!

He is not able to put it in himself - despite trying, If we're lucky it can take an hour for us (me) to get it in for him. We have days where we can't get it in. The hospital just say "keep practising" whch is really no help to me or him.

Any advice or tips you can give us will be greatly appriacted.

Thanks

Hi All,

I'm a bit confused - I posted an update earlier and it's now disappeared...

Zach has his new lens, but we are still no further forward... in fact I feel as if we have taken a step back as the conditioning solution now stings his eye!! In fact he was crying today until the tears cleared it.

The problems of getting the lens in remain - and he can only tolerate this new lens for no more than hour before complaining that he eye hurts and feels dry. When the lens is removed the corner of his eye does look red and sore.

We've tried using the saline only to put the lens in put we've both found that it doesn't "stick" to our finger!!!

The lens lady (sorry I don't know the correct term) is only available on Wednesdays so I cant do anything until then.

I know this is mnor companred with what a lot of you have gone throught - put already I've had enough.

What sort of lenses does Zach have. I presume Rigid Gas Permeable lenses?

I was lucky; when I had my first lenses in Aberdeen, nobody put a lens into my eye. I always did it myself, form the very first time. Here is what I did.

1 wash hands.
2 clean lens
3 balance lens on the tip of the middle finger of my left hand.
4 fill lens with saline
5 with a cloth spread on a table, face directly down at cloth. Ysubg thumb and forefinger of othre hand, hold upper and loser eyelids apart. bring lens into position immediately below my downward looking eye and bring finger to eye so that lens touches cornea.
6 remove finger and blink.

Getting the lens out is a breeze.

1 spread cloth on table
2 look directly at cloth with nose touching
3 draw back corner of eye
4 blink
5 lens pops out onto cloth.

Other sorts of lens demand a different technique.

All the best

Andrew

ps I am puzzled that you seem to have lost a post, None of the Moderators have touched it!

Hi Dotty.
Very odd about the disappearing update and the suddenly-new old post.... oh well.
How is Zach's vision with the new lens?
- I seem to remember the first one didn't make much difference, but he was really enthusiastic about the prospects with the new one.
What is the problem with getting the lens in? - the "EEEK!!" factor at the last minute? - or does it go in but not settle inthe right place, or..?
Is it possible his KC is developing so fast his eyes are changing shape as fast as he can be fitted with new lenses???
Rosemary

Morning Andrew and Rosemary,

Zach does have an RGP lens - when we got the first one he put it in himself 3 times no problem. But on getting home tried and couldn't do it and hasn't managed it since although he does have a go most days. I think Rosemary is right when she says the "EKK" factor. As he eye snapped closed at the last second - I've lost count of the number of times the lens has been "flipped" off our finger by his top lid!!!

Hadn't thought about the prospect of his eye changing shape that quickly - but I will certainly ask at out next visit - I fact I'm going to call the hospital tomorrow and ask to see the consultant again.

We did get the lens in yesterday but he only managed an hour before saying it was really hurting. When the lens was out he said his eye felt really dry.

Thanks for the ideas and support - there are some days when I wonder if we should just give it a miss and wait till Zach is older and can more appreicate the problem - but then I think if we get his eye used to the lens and his sight improves it will be worth it.

Dawn x

RGP lenses also depend on the natural tears of the wearer; they 'float' on a film of tears. If Zach has dry eyes then he will be finding the lenses very uncomfortable.

When you go back to the hospital, ask them to check his tear flow. It may be that they will offer him some artificial tears to compensate if he is not producing a good flow himself.

All the best, and tell Zach that he is not alone.

Andrew

I think I said this before on a similar thread.... if the vision is noticeably good and worth seeing with, the incentive is there to put the lens(es) in. No marked vision improvement, no incentive. indeed, able to cope with what I'm doing without - little incentive.
Freaking and blinking at the last minute is something I can well remember. There's definitely an EEEK factor to putting a foreign body into one's eye.
When I was first getting used to lenses, I had to try to train myself to stare fixedly out of the OTHER eye at something - anything - so my brain was forced to not-concentrate on seeing this THING getting closer and closer to That eye.
If you see what I mean.
easier said than done, I know.
I went straight into scleral lenses (at age 14) so have never had to put a corneal lens in, so can empathise with the problem but not the technique. But i do also remember when I started piggybacking - ie. wearing a soft lens under a scleral for comfort. They first tried to teach me to put the soft lens in first - I guess a fiarly similar technique to a corneal lens. I remember ahving great difficulty, including the EEK factor and blinking at the last minute. I have to admit I was very releived when, after a bit of desperation and "JUST DO IT!" stuff I was jabbing lens encrusted fingers into my eye, the decided this wasn't working as my eye was so steeply coned the soft elns wouldn't stay in place without the scleral on top to hold it. So they tried a new tack of sticking the soft lens inside the scleral, stuck together with celluvisc and putting them in together - I was sooooo releived!
I don't know how likely it is his eyes are changing shape that fast - but it's certainly a question that can be asked.
Good luck with it all.
And if he really isn't getting on with these lenses, might there be another type that might be better? - there are several types and varieties now.
Rosemary

Dotty,

One other thing that may help your son to get his contacts in is a make up mirror. I can get my contacts in now without the need for a mirror but I found it far easier when I was beginning to put them in to be able to have my other eye help look for my right lens if it had decided to a do a runner around my eye and vice versa.

It also made it easier in general to see all of what was going on and to get a better idea of what was happening and also to understand why my lens wasn't moving etc. For a first time lens wearer I'd say a makeup mirror with the nice big magnification mirror and a set of lights either side is a very worthwhile investment. I also carry a smaller one on me for emergencies etc if any crop up though, so far there haven't been any thankfully touch wood.

Hope this helps

Jez.

oddly theres currently a brilliant selection of such mirrors in my Brighton TK Maxx- up to 5x magnification and all at great prices ie much cheaper than Boots etc
good luck

In some cases KC can be agressive and advance over a matter of weeks.

For most it is a long process of degeneration and for some of us this includes long periods of stability too (over 4 years and counting).