UK Keratoconus Self-Help and Support Association

Thoughts, pointers, hints or advice all welcome:
Hi, Well here we are, 4 months since Charlotte's hyrops (left eye), to bring this episode of her story up to date briefly: Charlotte is 20 yrs, down's syndrome, active, cheeky, pretty little slim thing, diva of this parish
On Tuesday I am taking her to see her optom at Hull Eye Clinic (smashing place, nice staff etc, been going there with her since diag in Nov 2009), her left eye has some scarring from the hydrops and her vision in that eye is pretty poor. Right eye also KC but not as severe. Currently not wearing any CLs, am hoping that there is significant demolding of both eyes since January when she last wore CLs (at point of the hydrops episode). She is adamant that she will not be wearing RGPs again anytime soon thank you very much and I don't blame her, she gave it her best shot for over 3 years (various re-fits) and always struggled with comfort. For a person with her learning disabilities she was extremely tolerant and did amazingly. She's not in any pain and copes well day to day carrying on with her activities and enjoying life as always. I pray that the optom will be open to our request for her to try soft CLs as I can see that although she is "getting on" with things her vision is not best, and she quite often doesn't recognise people until they are really very close to her (like about 15 foot away) and she misses the detail on a lot of things generally. Her visual impairment has been a gradual development and so she's kind of grown up with it for want of a better description, it's not as though it's been "all of a sudden". She never complains, she just moves in closer to people/stuff etc. she's supported when out and about so is safe around traffic and when in the community. She has been on the list for a corneal transplant since advised by the consultant earlier this year after the hydrops. This may or may not happen, she would need a heck of a lot of help to get to grips with the whole deal and I believe that if the optom can bring her vision back up even a little way then we might be able to avoid her having surgery. Its rough for anyone to face surgery but for a person with her learning difficulties its a whole different ball game: from her understanding of why this is happening to her to behaviour issues and then everything inbetween. So much more than I think the consultant will have probably considered, and that's fair enough because thats my job as a mother I get that I totally do. I have to say though that her left eye is so much flatter since the hydrops but that scarring spoils what could have been a more positive outcome to such a rotten occurance. Since we don't have a crystal ball we don't know if she will re hydrops but seeing her as she is now, today, living her life, having fun, carrying on as normal, it plain to see that she's developed her own coping mechanisms and while I want her to be able to see better I feel almost like well, if this is as bad as it gets for her then it's actually ok, could be better and like I said, there's no crystal ball.................

They have a duty to try everything viable before grafting and even more so because grafting would be that much harder for Charlotte, absolutely insist they try soft lenses because they can work really well. They would be larger than RGP's so a different technique for getting them in but it could be said that RGP's are harder to insert because it's like hitting a target with the smaller ones.
Really hope you get somewhere

thanks for that. I'll update after Tuesday. fingers crossed!

nice to read a posts from you again, to be honest i would go for broke, sometime down the road you are going to be face with this, putting it off for a couple years or so is not going to help. who knows what tomorrow would bring in terms of health or money situation.

You could ask your GP towns down syndrome support groups for a special needs counselor for this situation, you could even ask your eye doctor for plastic lenses to see if charlotte could even cope with putting lenses in

Mousework wrote:nice to read a posts from you again, to be honest i would go for broke, sometime down the road you are going to be face with this, putting it off for a couple years or so is not going to help. who knows what tomorrow would bring in terms of health or money situation.

You could ask your GP towns down syndrome support groups for a special needs counselor for this situation, you could even ask your eye doctor for plastic lenses to see if charlotte could even cope with putting lenses in

mmmmmm it's not so much a case of "putting it off" but more of a case of working with Charlotte to take on board the idea of any kind of surgery if and when the need arises really. Seeing how she is living her life being sparky, happy etc (albeit with the low vision altho not complaining about it, very accepting and believe me she would tell me if she was upset about it) I just don't want to "rock the boat" so to speak, and have her distressed and totally out of her routine, upset and sad feeling rough with it all. So who knows, she may never have a graft if she continues to be as happy as she is and her eyes stablise to a degree. If we can bring her vision up a little with "softs" then even better. Its a tough situation for me to get my head round for her though: vision improvement/surgery and all the drama of that versus Charlotte remaining happy like she is today. Somedays I feel as though I'm having a battle in my head, a bit of a no win as either way its never going to be perfect for her. I'm trying to do my best but without a magic wand it's nigh on impossible really.

You're doing a great job as Charlotte's mum, I've always been impressed by your posts.

Loopy-Lou wrote:You're doing a great job as Charlotte's mum, I've always been impressed by your posts.

Aw thank you that means a lot x