UK Keratoconus Self-Help and Support Association

Hi. I am posting here on behalf of my daughter who is 17 years old. She has Down's syndrome and has recently been diagnosed with Keratoconus. She has worn specs since she was four years old as she has a high astigmatism and myopia. I had noticed over the past year that she had gradually begun to look over the tops of her specs so a trip back to our optician (Sept) and in with the eye drops to check her prescription. He could see slight hydrops (I didn't know this at the time though) so referred us back to the eye clinic at our local infirmary. Nov 5th was the day of the diagnosis. Quite bluntly and crudely we were told that the worst case scenario would be loss of vision. I nearly fainted with shock. This Dr was talking about my precious daughter in such a negative way. They had no leaflets to give us. We came away in a daze, Charlotte wondered what on earth I was upset about, she is very "on the ball" and seeing me upset, upset her too. I contacted the Downs syndrome association in London who put me in touch with Dr Maggie Woodhouse. She was very positive and reassuring. This Monday we saw the specialist at the eye clinic who reassured us even further. Thank God! I only wish that we had met him first and then we wouldn't have spent the past 2 and a half weeks in living hell. Charlotte's KC is to be monitored again in 2 months time but she has an appointment next week for a try at contact lenses. Another learning curve for her and us! She is keen and she is looking forward to not having specs on! Anybody else out there who has Down's or is a parent/carer and has KC. This is all new to us and we are pretty worried to say the least. Thanks.

Welcome to the forum.

I'm sure that there will be somebody along in a moment who can help.

Andrew

Hi Charlottes Mum,

There used to be another Mother posting here a few years back with a son who had Downs and he wore contact lenses. As far as I know she used to put the lenses in and out for him but might be wrong. I did a quick search on the forum and two names appear, KateF has a son, must be in his 20's now and Lois for Stacey posted on the old forum circa 2003 and both hae children with Down's syndrome. I am unsure how you view posts on the old forum, but John Smith the web master might be able to help so you can read their stories and possibly get in touch with them. So you and Charlotte are by no means alone.

All the best

Gareth

Hi Charlotte's Mum and welcome!
I'm sorry you had such a bad experience, but it's good you've now found helpful people. Maggie Woodhouse is THE expert on KC and Down's syndrome so you're in very good hands there.
We do have members with Down's syndrome though not many of them post on the forum. If you e-mail me your postal address anne@keratoconus-group.org.uk I can send you some of our information leaflets, including a recent newsletter with an article from a mum of a son with Down's. And have you been told about an excellent website www.lookupinfo.org which is specifically for information about learning difficulties and sight problems? If you search for keratoconus on that site, you'll find lots of very useful information and experiences. They also have a telephone helpline.
I hope Charlotte's trial with lenses goes well. Do you know what sort of lenses are being tried? I know some people with Down's syndrome have got on well with scleral lenses, which are much bigger than ordinary lenses and easier to handle.
Anne

Hello and thank you for the warm welcome.

Anne, your name was mentioned to me last week by Brian Melia at Hull Royal Infirmary, he was extremely reassuring and it was he who suggested that I contact the self help group. I have found the website "look-up", after a general google search and a few "scares" I decided to go with look-up as it seems to be the most informative one so far re Charlotte. I will email you with my postal address, so thank you for that! We aren't sure yet what type of lenses that Charlotte will be trying, we do fully expect to be doing the ins and outs for her though. My husband is even going to start wearing contacts himself so that Charlotte can see that Dad does this too! We'll just have to see how it goes. Early days yet I guess.
Angie

Hi Angie,

You may be interested in a personal story from a Mum with a son with Downs' as she describes his experiences with corneal cross linking, which is a treatment for keratoconus increasingly being done now, though more privately than on the NHS in the UK. http://cxlclub.org/CXL_Story1.html

I am sure I can put you in touch with her if you want to talk. If you want to ask about anything technical on the webpage, please contact me.. all contact info in my signature below.

Lynn

It's the night before Charlotte's contact lens tryout. She's been chatting about it with us on and off for the past couple of days. Today she drew a picture to give the optometrist tomorrow morning, she's called her drawing, "Charlotte's Eyes". She drew herself with her eye's wide open and told me that she will be like the picture so that the lenses will go in. She's such a little star. I only hope she will have them in. I've told her that it will feel weird at first and maybe for a little while too but that we don't really know for sure................

Wish her well from all of us!

Andrew

The story so far: Charlotte was a little star! after a LOT of coaxing Agnes (the optometrist) got a lens in her right eye and measured it and did all the "doings" with the instruments. Char coped really well, I was so proud of her. No crying, or anything like that. She was very nervous but SHE DID IT!! Wow! Getting it out was a little bit of a job as Char had been dabbing at her eye with a tissue (it was watering a little) and she pressed too much and the lens moved upwards but
Agnes gently retrieved it without even a peep from Char. I had one in too (first) to show Char that it was ok, and actually it was. I never even felt it; the worst part was the anticipation. It was really comfortable. Agnes explained that as Char was quite nervous it would be best to just go with the right eye lens at the moment until she is more used to the feel of it and is used to us putting them in and out. The right eye is her stronger one. The true lens will be ready by next Wednesday 9th December. We have an appt at 11 a.m for the fitting and a tutorial in handling and hygiene etc. I know it won’t be easy at the start for Char but I just hope and pray that she copes with it in and that it feels ok for her. Agnes explained that Charlotte will be able to see much better even with just the one lens in for now. I truly hope that is so. Such a brave young lady today. And me such a proud Mum! Must remember to ask about others lenses that are options if these are uncomfortable for her.

Brian Melia at Hull Royal Infirmary told my husband and I two weeks ago that by looking at Charlotte's scan results he can tell that her KC is not a recent development and that she has had it for quite a while. She's 17 now. I know that her vision is actually very good/managed well/she knows whats where and could pick a pin up off the rug if necessary!! Very reassuring for me re her sight. I have tried to "take a step back" and assess her without the panic that, as her mother, is ever present these days! I know whats what with her, almost like a sixth sense. Its always been that way since she was a newborn. She had reg checks at high st ops since being discharged from HRI at the age of 8 yrs. There was not really much change in her script over the years and it was only at my insistence that the opt put eye drops in her eyes to double check the accuracy of her script and he detected (very slight) hydrops and referred her back to the eye clinic at HRI. (Brian Melia has since said that her hydrops is so very slight that it does not pose a prob at the moment). She had been (increasingly) looking over the top of her specs for a few months at that point which is why I got back in touch with our local opt. Prior to that appt she had seen him for a routine eye test in April this year when nothing untoward was mentioned. Suffice to say, Charlotte has a track record of "being a little silly" in the opts chair during tests! She knows her letters etc but will absolutely mess about giving the wrong answers, eg saying H when its a X of the giant letters, and then saying, "No its an A. No its an H. Just tricking!" I always have a quiet word (out of earshot of Char) before hand with the opt to explain this and we usually get there in the end. However, that said, I knew when things just weren't quite right, re the messing about with her specs, looking over the tops of them, taking them on and off etc. Uncomfortable nose bridge probs etc. People with Down's (and indeed some Asian people too) have a smaller, flatter nose bridge and often specs just don't stay up! I heard that there is a new range of frames being developed for this though? Anyone heard similar? Charlotte will still obv need specs for back up. SORRY FOR LONG POST, Had a lot to say this time. Thanks, Angie.

Well done Charlotte; a real star!

Andrew