UK Keratoconus Self-Help and Support Association

Well it's 7 weeks and 4 days since Charlotte's hydrops (left eye) and 9 days since the clearing/healing process really kicked in. Every couple of days her left eye looks clearer and Charlotte is seeing more out of it, albeit thru the top bottom and sides as she describes it. All that remains visible now is a little bit of cloud (still to clear) and the vertical scar caused by the rupture. Charlotte had her appt with Mr Stewart yesterday, he said he was "very surprised that it has cleared so quickly" - great to hear that from him! Prescribed some steroid eye drops for twice a day for a fortnight and then 1 a day until we see him next in mid-May. Drops to halt any blood vessels interfering with her cornea he explained. We discussed Charlotte's options for treatment and at the moment we are going to see how well Charlotte copes day to day and we have the option of graft as discussed last visit. (Charlotte is on the list now) Charlotte was ok to chat and said she might quite like a "new window" one day. Appt made with the hospital optom for nx month when we will discuss soft lenses for KC and I explained that I would like to explore the possibility of Charlotte having specs with plain glass LS and script RS if her right eye can be fitted as such. Mr Stewart said it would be worth looking into it and the options for softs and we will talk about that with Brian the optom in April. No point at all now of ever putting a CL of any description in her left eye pre graft he said. I asked about stabilising the right eye (CXL) and Mr Stewart said that at the moment it does look pretty stable but that we can cross that bridge if and when we need to, he did add tho that it maybe that the time has passed for CXL there, I kind of expected to hear that tbh.
So who knows, maybe Charlotte will cope with her sight as it is thus holding off on the graft for a wee while longer? I will certainly make sure that she doesn't become too frustrated or insular due to her reduced vision. I've explained to her as best I can what all this means and that she is in charge of her own body and that she can ask her dad and I as many questions as she likes so that she can make her mind up about having a "new window" for her left eye. If and when it seems likely that a graft is of her choosing then we start a new topic with her re how the Doctors do it and hospitals etc etc. Considering that she has Down's syndrome and severe learning difficulties she has behaved impeccably during what has been a very difficult and worrying time for all.
So she's happy (as she has been throughout this whole episode). If Charlotte's happy then my husband and I are happy

hydrops can sometimes change the surface of the cornea, sometimes for the better, has your specialist indicated there is more scaring or the cornea surface has changed anyway other the marks of the hydrops.

i had a case of hydrops on holiday, and ive lost the vision from the sides

Hi
yes Mr stewart told us a couple of visits ago that there was substantial scaring "vertical opaque scar". vision pretty rubbish pre hydrops in that eye so now its even worse. the good thing tho is that her eye is so much flatter since. she has some vision thru top bottom and sides and her right eye looks stable at the mo we are told. she's been so patient and hardly complained at all and I must say this business hasn't stopped her from carrying on with her day to day routine apart from gymnastics which she was advised to rest from due to poss compromising her IOP. but she just swapped that exercise for more Wii games, dancing and stuff.
cheers.
Angie

hope everything goes well for you, and i know its very hard for your daughter, but i can imagine its also hard on you and husband. you mustnt rollover. you need second look as well. reduce wwii games as well. less eye strain. anyway good luck

thanks, it's difficult for her, she's very active and is on the go all the time, here there and everywhere, enjoying her activities and stuff. Never complains much if at all. loves her dancing and singing!