UK Keratoconus Self-Help and Support Association

Just spent a couple of hours at the hospital with David for his second fitting - first with the lens made specially for him.

I again had to tell them that David has autism as well as KC This really is becoming a pain. However the Optometrist that we seen today was a gem really patient with both of us.

I was so proud of David today because he had written a list of questions that he wanted to ask and managed to ask them all. This is a first for David who usually leaves all of the questions to me and I was impressed. Again what a patient lady. She confirmed that David does have KC is both eyes although the left eye is in the very early stages. I now wonder if this is something that we should be passing on to DLA, which David receives the care component for?

The lens for the right eye was no good and she has had to start again and has said that she will get David back asap. I made a request that we see her again and she is going to do her best to arrange this David really liked her and that is very important where he is concerned. His eyes were very irritated, red and streaming. Even with the drops he could still feel the lens Of course it is very early days but I do wonder if his sensory issues will impact on this?

We have been home for a couple of hours now and his eyes are both still very red and sore - is this usual?

Carole

Hi Carole...

First excellent that you had a nice optom and quite rightly try and keep with her as it will build David's confidence.

The irritation is normal, unfortunately, as KC eyes ARE very sensitive. However, did you discuss the sensitivity issue with the optom? There are ways of combating this, either with soft lenses pre se for KC or soft lenses used as a carrier or piggy back for RGP's. If you have her name, you might want to ring the optom back and express your concern that he is not going to be able to tolerate RGP's on their own.

DLA - I'm not sure that you need to tell them but it might be a good idea to anyway.

If David's eyes don't settle down, try some cold compresses using a flannel soaked in very cold water - this usually makes them feel so mucyh better - especially if the lids are hot to the touch.

Lynn

Carole

Really glad things have got better from a logistical perspective!...WOuld be ideal if he is seen again by the same person; especially if he felt comfortable with the person!

J

Something of a mixed day then Carole.

I really hope you and David get to see the same lady next time. Some continuity in our care makes a huge difference to all of us, but even more so for David. It could make the difference between him suceeding with his lenses and having a rough time.

I've no real advice to add about David's eyes tonight but I used to have one of those gel filled eye masks. I never warmed it up or put it in the fridge as I found it very soothing at room temperature. As it was something I used regularly it was easier and less messy than a wet flannel.

Carole

We are all thinking of you and David.

all the best

andrew

Hey there. Am very glad that some things turned out ok for you both as in being seen by a nice optom, that makes all the difference! I have decided that i have slightly too many, and as they all have different styles and ways of practising that i need to just try to keep to one, especially as two are back in Wales which isn't much help when i can't see and i'm in London.

I have a nice eye pack which i keep in the fridge for bad eye days when i just can't put my lens in and it really does help. All nice cool things are great for tired eyes.

I can relate to David as it takes me a long time to trust professionals as well but hopefully if he keeps with this lady they will get on well Hopefully you will all find a good way to help him with the lenses am wishing you all the best!

Sweet X x X