Advice needed please

[Janet Manning]

Hi Ann,
Sorry to hear that you and Penny are having such a hard time right now. As Anne and Gareth mentioned, scleral lenses might help Penny. They are very big and cover most of the visible part of the eye. They are very comfortable and cannot fall out. It is also rare to get grit/dust under them. There are at least 2 Mums on this website who insert them for their youngsters with learning difficulties. It might save Penny from another graft. Just not sure about the use of lenses in an eye which is painful, but it might be worth enquiring.
Will be thinking of you on 14th.
Janet

[shoayb]

Hi Anne, i hope your daughters getting better and that you have good news to report back... I'm a newbie in terms of KC and co-incidently i live in Preston!!!
Specsavers eye test showed i have KC but thats it!! i have been referred to RPH and awaitin an Appt!!!
could you perhaps give me any tips!??! how can i get to manchester if thats th ebest for this?!?!

Kind regards!

[kate farminer]

DEAR ann and penny
PHONE ME EVENINGS ON 01452 421328 - soon!!

hi
Hi
Im the mum of Dale - 19, Downs, heavy, challenging, little communication . Dale drove me insane at 15 , very miserable, argued, made me cry etc moved to boarding school - it wasnt till a lot later i realised that it was depression probably aassociated with loss of sight.

I met a young man at the last KC conference who could describe to me what the changes felt like, then i understood the enormity of it.

After a chase around and a quest for knowledge found a Good Man who gave Dale scleral contacts when he was 17, no going back!! His vision, not correctable by glasses by then, went from 2/20 to 14/20 in lenses which is better than mine! Dale asks for his lenses every day, is tolerant of them being fitted by lots of different carers (despite diagnosis of autism , attachment disorder, oppositional etc etc, he knows what works for him!)

The trick has been to treat the lenses as normal , like toothbrushing or putting shoes on. I banned everyone from fussing , using phrases like 'hospital' or 'bad eyes' , making it a Big Deal, and from using cola or sweeties to bribe -
and dale has accepted it all very well. Do you think scleral lenses woul d help penny??

he has only had 5 no-lens days in a whole year.
Today (Morning after a party!) he had one red eye so we put one lens in te other eye and he went off like a lamb. He went with his Dad to the Aston Villa match - and could see the ball - for the first time!! Followed the whole thing.

I now think a lot of his early problems came from not understanding people because he could nt see enough of their faces to 'read'then well. Or maybe he was just born naughtty !! Im very glad i wasnt offered surgery ever - lucky to find a route that works for us.

please phone

kate

kdfarminer@tiscali.co.uk