CXL - Downs Syndrome with Keratoconus.

[Jane Shaw]

Dear all,
Thought I would drop you a line to say our Down's Syndrome son of 37 years of age has just recently had CXL done on both eyes in Swansea.
He had the left eye done in October 2008 and the right one done 5 weeks later in November 2008. He had it done under a General Anaesthetic. Brilliant. He just loved all the nurses and the fuss he was getting!! [He had no problem going back in the November. Obviously, his first experience in the October had not unsettled him at all.] He had a soft contact lens patch on his Left eye and on his Right eye when that was done, and both times the specialist put on a normal eye patch to prevent our son from rubbing his eye. He stayed in the Day Unit for a few hours afterwards to recover and then he was discharged with co-codamol in case he complained of pain. When the left eye was done in October 2008 he complained of BACKACHE! due he said to the trolley that he was lying on. Did not complain of eye pain at all. The second eye was done in November 2008 and he did complain of pain in his eye once when still in the Day Unit. They gave him some painkilling medicine and he soon settled down. They discharged him from the day unit and I gave him some co-codamol during the night and that is all that he had. The soft contact lens eye patch on both L, and R eye were removed on the 2nd day following the CXL procedure. The cornea had healed. For a week I did continue to put a normal eye bandage on his eye just for sleeping and took it off each morning. We had bought our son 3 pairs of ANTIGLARE glasses [from Optima ]of different shades and our son was able to choose which pair to put on according to the light that particular day. We returne to see the specialist 5 weeks later. He was delighted with the results. Our son can now see well enough to drive a car. No, we are NOT going to give him lessons!! We are due to see the specialist in 3 months time.

[pepepepe]

Excellent ! Great parenting too ! (it can be a challenge with out any health concerns !), I'm glad that the road now should be more of an even one for your son.

Let us know how he is getting on as often or as little as you can and want to, we want to know (!) about our brothers and sisters who has KC !

Pepe

[Andrew MacLean]

jane

That is really good news; please give our best wishes to your son!

Andrew