Well here we are 5 years since my daughter Charlotte (who has Down's syndrome) was diagnosed with KC. We saw the consultant in Hull at the eye clinic today and Charlotte had a scan (first in quite a while). Her left eye is the same as it has been for quite sometime now; cornea nice and flat after the hydrops 22 months ago. Central scarring remains although she would seem to be "looking past" this. Good to hear him actually say he doesn't expect any real change in that cornea. Her vision in that eye is significantly better than at diagnosis in 2009 due to the healing post hydrops which even though it was scary when it happened, with hindsight it has kind of been a positive outcome.
Re her right eye: at diagnosis in 2009 her cornea was already very thin. Below 300 microns. It hasn't changed very much at all which I suppose is reassuring that there hasn't been a massive negative change. So of course it goes without saying really that it's way below the NICE guidelines for CXL of any type. We knew that also but had harboured a bit of a wish that maybe...............
Mr Stewart was pleased with Char though. All we can do at this stage is carry on as we always have re her eyes and hope and pray that there won't be any more progression of the kerotoconus. We know that as she gets older her corneas will be stiffening naturally but as she's still only 22 yrs she's still in that zone for potential progression. Thing is no one has a crystal ball. One can never rule out a corneal graft in the future. nor can we say it'll ever get as dire as that. Charlotte rarely grumbles and is a very happy, busy, sociable young lady with a zest for life and a love of all things fashion and music etc. I have continued to add updates from time to time on her as I know there will be some who like to hear and more importantly in case there are any other parents of people with Down's syndrome who like myself are caring for a child or adult child with KC. I've found this forum to be very helpful over the years and I know I will continue to do so.
Thanks for being there
