UK Keratoconus Self-Help and Support Association

Hello. It's been a while since I posted on here. Charlotte is almost 19yrs now. We last saw the optom with Charlotte at Hull Royal in March this year. He said her eyes "looked fine, KC at plateau & that the longer it was like that the better the long term outlook for Char". He was very pleased with her. He checked the fit of lenses = good allbeit a compromise re left lens fit versus comfort (which hadn't been an issue until recently). Appt due next month. So things were going very well for Charlotte, she was happy to have her contacts in, no bother at all, but in the past few months she has fiddled with her eyelashes A LOT, (initially a habit we think) but she has now worked out how to get the lenses out. She'll often come to us with a lens on the end of her finger!! Not good, re method of doing so, hygiene etc etc. We have tried everything we can think of to deter her from doing this but to no avail. She keeps saying that her eyes are "bothering her" when she has her lenses in. She would never say this before. Her eyes look good, no infection, no lashes stuck, no red rims, no hydrops - the optom said we would see it if it was there(?) - they look lovely and clear as always. Sometimes it can be difficult to determine how Char is really feeling & we have to be very clued up with her in terms of what she is trying to convey (although her speech is good) behaviourally she can be often quite challenging. It's got to the stage where she comes home from school each day and the lenses are in the case. She's popped them out herself more or less as soon as she gets there. Staff are very good there, they do keep at her to stop fiddling but she just will not. My obvious concern is that the KC has advanced but to be honest my gut feeling is that the comfort of her lenses are compromised. Without lenses in Charlotte is quite happy, she doesn't complain about poor vision although obviously not wearing CLs is not ideal and specs (apparently) wouldn't give good vision now. She wore specs until 18 months ago before diagnosis. Given the choice she will prefer not to wear her lenses and I'm almost forcing her to have them in when they obviously are so uncomfortable. She lets me do it but I hate seeing her discomfort. Her eyes look comfortable without lenses in but are very red and piggy-eyed and watery with them in. I spend half my life worrying about her KC & the other half putting CLs back in. We are scrupulous re hygiene, changing cases regularly etc etc. I know that 100% I can't do any more in that area. This morning after she popped both lenses out within 15 mins I made the decision to stop putting them in until we are back at the eye clinic nx month. I don't know if I'm doing the right thing but suffice to say that Char would pop them out when I'm not looking anyway and this way at least for now I'm reducing the "fiddling" somewhat. How she's never got an eye infection I'll never know!!! This morning she even said to me "I want some lenses like Dad's that won't fall out". (Hub wears soft dailys - different kettle of fish entirely and doesn't have KC) but that really got to me when she said that! Out of the mouths of babes. When we go I would like to be "armed" with more knowledge re other types of lenses (if they may be what are needed). The optom, Brian Melia, is lovely & very thorough but I know that once I get in that consulting room with Charlotte I'll forget what I wanted to ask him. Any advice/guidance at all on all this would be very, very much appreciated. Sorry for long post.

It's very good news that Charlotte's KC has plateaued (spelling?!) And it sounds to me as though you're doing exactly the right thing in leaving the lenses out until the next appt. There's no point in making lenses a battleground if Charlotte is happier without them for now. We've heard similar stories from parents of teenagers at various meetings and conferences where the youngster just hasn't wanted to wear lenses and the advice from specialists has been not to force the issue but let them come round to the idea of lenses in their own good time.
There are other lens options which could be tried. The obvious one would be scleral lenses, which are much harder to take out (the downside being that they're harder to learn to put in!)
I think you're on our mailing list, so you should have had a newsletter a year or two ago which included a summary of a very good talk about all the specialist lens options for KC. If you don't have it any more, just drop me an e-mail anne@keratoconus-group.org.uk and I'll send it to you.
I know we've all found Charlotte's story inspiring in how well she's managed in the last couple of years, so I'm sure you'll find a solution to the current hiccup.
All the best
Anne

It is really good to know that Charlotte's condition has stabilized, and we all wish her well as she navigates this setback. Give her a hug from all of us!

As Anne says, there are lots of lenses that may be more stable; sclerals, hybrids, soft lenses for KC, but each of them has the drawback of being more difficult to learn to handle than the good old rgp lens.

Every good wish.

Andrew

ps: Anne K I am not an English graduate but I wonder, Is 'plateau' a verb?

Thank you for your replies. I feel much better (and calmer) for reading them.

Appt in July so we'll see what happens after that.