New Diagnosis

[DSunderland]

Hi Carleen, It's nice to talk to a member of our "special" group.
Last night I put a cold face cloth over his eye for a few moments and it must have felt better or he would't have tolerated this for a second! Getting the cream into his eye is damn near impossible to be honest but like everything else we have to persevere. The hospital have been very understanding and sympathetic and I have to say the stay in hospital was one of the nicest we've had! They gave us a 4 bed ward to ourselves and were great about not approaching without gaining permission first. It just made everything easier to deal with, without having to constantly explain about the autism and self harm. That being said it was still demoralising to hear that due to David's many special needs there isn't a great deal that can be done. I think someone should invent a cream that could be smeared over the eyelid, that would make things easier in this house!!
I know I will have loads of questions over the next few weeks so you will probably see me on here quite often, and I'm sorry to say you'll probably feel as though you're being stalked (only joking).
Thanks Dee

[Carleen]

Hi Dee,

Yes, it is tough when you know there are lots of options available but to be denied them due to the inability of our kids to cope with the treatment. You have to adopt a "day at a time" outlook. One of Jen's fellow residents in the house where she lives is an autistic self harmer and I know how difficult she is to manage. Talking to as many people as you can is very important because you just might get some good advice from someone in a similar situation. I'm really lucky that Jen's pretty easy going, which is great.

I don't mind being stalked!! It's great to be able to talk with someone who is in a similar situation. I've felt quite alone in all this at times. I cruise the internet quite often to try and educate myself about keratoconus and it's frustrating to read about treatments that others are having - albeit with varying success. I'm learning to let go now and try and focus on what we can do for Jen rather than what we can't do. Right now, it's keeping her eyes lubricated, getting her specs and trying her with her favourite DVDs - right now that's "UP" and Chitty Chitty Bang Bang. I'm looking forward to her reaction when she get her glasses. I don't expect them to stay on very long but we'll get there I'm sure!

All the best.
Carleen

[Lizb]

I am glad that the cold facecloth option has brought your son some relief, it is small things that other people have found helps and share that means that this group and others like it can help other people.

[DSunderland]

Hi Liz, you're absolutly right it is only by talking to people who actually have this condition that I know I'm geting the right advice. After all, if you all don't know who does?
I must say the panic has subsided a bit since I've read a lot on this site. It's good to be able to read peoples experiences not only with the KC but with treatments and hospitals. It never ceases to amaze me how treatment can differ so much from hospital to hospital.
Thanks again, Dee


Hi Carleen, "One day at a time" should be the mantra of all parents like us! I think I may have it tattooed on my chest.............or maybe not!!!
Have a good Bank Holiday weekend everyone.
Dee

[rosemary johnson]

Hallo Dee - welcome to the forums and sorry to hear of all your and David's problems.
I don't know why anyone should tell you that pain killers don't work for eyes/KC/hydrops - when I get sore eyes I take ibuprofen and it works for me. Or paracetamol, but these days, paracetamol is worse for my asthma than the ibuprofen.
I'm also a veteran of 4 (at least) hydrops, so know they can be survived....
Onm case you haven't discovered .... some hopsitals tend to prescribe loads and loads of eye drops and whatever for a case of hydrops, many of which sting when applied. Others reckon that there is nothing that can be done usefuly and the best thing to do with a hydrops is to leave it well alone to heal by itself. I've always had the luck (?) to deal witht he latter type - only ever been prescribed/offered a loval soothing cream, and didn't bother cos paracetamol from the supermarket was cheaer... Not that I'm criticising any medics' practise, you understand, just pointing out there seem to be differing views and practices.
KC itself shouldn't be painful - though some people who have KC also get a lot of problems with itchiness from dry eyes. SOmething not directly caused by the KC but often occurs together, it seems.
SOme people find different brands of lubricating eye drops help; for others, the important thing is to keep hydratd by drinking lots of water/juice, reducing tea/coffee or sometimes dairy product consumption.
If a hydrops is still active, ie. the split is open and leaking, then it will not have been there long (probably...... unles(. And it is usually only the early staes when it is painful - once the rupture is healing and the cloudiness jsut taking time to be "moved on", the pain should improve.
Hope this is some use - hang in there and good luck with it all.
Rosemary

[DSunderland]

Hi Rosemary,
Thanks very much for all your help, I will certainly try all of your suggestions. I hadn't realised that hydrops could occur again and again. We've only had one appointment with the eye infirmary other than the stay in hospital and to be honest I'm still feeling my way round. I think gathering as much information from other sufferers is the way forward. Davy had a really bad night last night and I was even having a rant on the rant forum!! I got loads of help on there and today have been out buying various things.........desperate times call for desperate measures!!
I'm off to have a glass of wine while Davy and his Dad are going to try and have a sleep.
Thanks again,
Dee

[Carleen]

Hi Dee
Enjoy the wine and time out. You certainly sound like you need it. The early days for Jen were the worst but by week 2 she was feeling better - she couldn't tell us but she was sleeping more and not so grizzly. Hopefully David is going to feel better soon, too. He aslo may be feeling frustrated the the loss of vision from the hydrops. Jen still tries to wipe the scar off her eye and it's been 4 1/2 months for her.
I'd better get of to bed now. I collect Jen tomorrow after work and since my husband, Owen, is away I'm on my own with her. It's abit tricky as she needs constant watching and often doesn't sleep much so I need to be well rested.
Had the first proper frost here this morning -1 deg C. Brr - fingers froze hanging out the washing. We can go as low as -12 so mustn't complain!
Take care.

[rosemary johnson]

Hallo again Dee - hope things are improving a it
I should add : though it's clearly POSSIBLE to have several hydrops, as I have done, the hospital were very surprised - they say that having more than one per eye is very rare.
Rosemary

[DSunderland]

I don't know if I'm "tempting fate" by saying this but Davids eye is starting to look a lot better. A lot of the mist has gone and the swelling seems the have gone down quite a bit. Can anyone tell me if this is normal chain of events? It was April 1st when he went into hospital and had steroids injected into his eye and since then we've had cream to use although not a lot has actually made it into his eye!! Today is 11 May so that would fit with what some people had said about 6 weeks being a time when we might see some improvement. Anyway we're keeping everything crossed that it continues.
WARNING DAFT QUESTION COMING UP
Is it safe to go swimming with hydrops? David loves the pool but we haven't let him go while his eye was in such a state. We don't see the doctor for a couple of weeks so I thought I would ask all of you.

[Andrew MacLean]

That is good news.

As to swimming, a good pair of goggles would help. Just the same, I'd be guided by David's ophthalmologist.

Andrew