HELP NEEDED

[Carleen]

My disabled daughter was diagnosed with keratoconus on Christmas Eve when she suffered from hyrops. Looking back she had been developing the disease for at least 2 1/2 years whe she began to be light phobic. She had been assessed at our local hospital in May 2009 but due to her disability the condition was not diagnosed.

I need to know what she feels like and since I can't ask her (she can't speak) the next best thing is talking to a fellow sufferer of hydrops. All the usual treatment options are not available to her eg contact lenses so our only option is cross-linking treatment, but even this may not be possible if the post op recouperation is too long - she may need to be sedated/restrained. I'm desperate. Can anyone help me?

[Andrew MacLean]

Carleen

Welcome to the forum; I guess that none of us can understand the situation you are in.

That said, let me assure you that there is life beyond a hydrops. It can take months to heal, but the cloudiness will subside in your daughter's vision.

As to CXL, I am not sure why you would consider that for your daughter; as a treatment it aims to stabilize your the vision, but if you go into CXL in need of a contact lens, there is every prospect that you will still need a lens after the procedure. Also, if your daughter's cornea thickness is less than 400 microns there would be a real danger of the procedure itself causing added damage to her eye.

In your place I would ask the consultant at your daughter's hospital for a considered opinion on all treatment options, the positives and negatives of each, and an assessment of how each would impact on her other disabilities. When you have been through that, you will be in a better position to make your decisions on how to go forward.

Every good wish.

Andrew

[Carleen]

Hi Andrew
I understand what you are saying with regards to treatment options. Correcting her vision is not really a possibility since she can't wear lenses. All we are hoping through CXL for is for her right eye to be stabilized (she has minor KC in this one)rather than it go the way of her left eye and suffer the possible damage of hydrops. I doubt that her left eye can be treated with CXL but until her hydrops heals and she can have some diagnostic work done under GA then we won't know if it's possible or not.
I have several specialist appointments booked for her with different professionals to get a wide range of opinions. Unfortunately with no way to communicate with my daughter I am placed in the position of having to make some tough decisions without knowing exactly how she feels - hence the question I asked about how hyprops feels and how it affects an eye already damaged by keratoconus.
I have even been told that if her left eye causes her a lot of distress it may need to be removed. This, of course, is a last option to bring her quality of life and would only be done after a decision of a medical ethics committee. So you can see what we are up against....

[GarethB]

Hydrops ranges in severity an the people here have reported it as being realtively pain free to being extremely painful leaving them very sensitive to light. The most common description of hydrops I have seen is that everything goes extremely foggy in addition to the blurs that we see.

I will pm you a fact sheet.

These will help give an idea of what vision with KC is like.

http://www.visionsimulations.com

http://www.kcvision.org


Unfortunatly hydrops is as unpredictable as KC in that the outcome post hydrops can't be predicted. In some cases the resulting scar is unobtrusive and leaves the cornea stroger than it was and also with improved vision. In other cases it is the exact opposite and the scar means that surgical options such as CXL or intacs is no longer an option.

I know that soft lenses are available for babies that are born with vision problems and glasses can't be used and there are parents here who have children born with Down's syndrome and have to put the contact lenses in their childrens eyes. I know you say contact lenses aren't an option, but I was just wondering if anyone had suggested soft contact lenses for KC as the material mine are made from is a very similar material to that used for babies.

This probably doesn't answer your question directly but I hope it helps you make the difficult decission that is ahead of you.

All the best.

Gareth

[Andrew MacLean]

For an article on Hydrops, go to

http://www.keratoconus-group.org.uk/exp ... nd_kc.html

Andrew

[Carleen]

Hey Guys, Thanks a lot for your useful links. I can share the sites with her care givers at her residential home so they can have some understanding of how she feels and views the world. Much appreciated. I spend several hours a week online trying to educate myself so I can be a good advocate for my daughter and get the best possible outcome for her given her limited abitilies. I'll keep you posted on her progress and welcome any other information you can share. If you know of any support groups based in NZ I'd appreciate that too. I've had a look but have been unsuccessful to date.

[GarethB]

Hi Carleen

I can't find anything for NZ, but the next big island to you has a support groupthat might help!

Keratoconus Australia

Regards

Gareth

[Carleen]

Thanks - I may even visit an eye specialist for a 4th opinion while on my next visit there !!

[Ali Akay]

Hi Carleen

This is a tough one. Specifically regarding what your daughter may be feeling, as Gareth says, there is wide variation in severity of symptoms with hydrops. Very few people get intense discomfort and light sensitivity, but great majority only know there's something the matter as the eye looks bluish white and the vision is obviously very cloudy. But, as her other eye is ok, one would think she would not be greatly distressed. If she was in a lot of pain or suffering from intense photophobia I would have thought there would be some signs you would be able to pick up. I have never come across an eye being removed due to hydrops, so I would suggest dont even think about that one. Often hypertonic saline drops or ointment (5% sodium chloride) is prescribed but doubtful how much they really help. All the best.

[Carleen]

Thanks for your comments, Ali.

She must be suffering from photohobia as she keeps her eyes shut most of the time - even before the hydrops occurred. She is better when wearing her dark glasses (a relatively new thing as before hydrops she wouldn't even keep them on for a few seconds) and when I close the curtains in the house and turn the lights off. This may just be due to very dry / irritated eyes though. I wish I was a mind reader!!!!

She is definitely more comfortable than when the hyrops occured as she doesn't pull her hair anymore (her sign for a headache), althought she is on paracetamol 4 times a day now. She is having hypertonic saline drops x4 a day too along with antibiotics. The trouble is, the carers are only doing her lubricating drops x4 a day and she should be having them much more often. When she is at home I use them on her every hour or more if needed but at her residential care they have all their medical protocols to follow and I think it's just too hard... That's this week's challenge - to get them to administer her drops hourly as the hospital have recommended.

Oh well, I'm sure we'll get it all sorted out soon - I just have to keep pushing. I really appreciate the support of the Forum though - it's been wonderful.