Special Needs Daughter with KC

[Carleen]

It's been a while since I was on the forum so here's an update.
I saw the private specialist yesterday with Jennifer and he said he wouldn’t do the cross linking on her for several reasons.
1. Her age. Since she is 31 he says that the KC would probably not advance much more.
2. Measurements. To do the cross linking he said he’d need to prove her KC was progressing and to do this would need several GAs to enable him to do the measurements. Again, not an acceptable option due to the risk of multiple GA.
3. Her KC is so bad that he didn’t believe that doing XCL would give her any benefit.
He has estimated that her vision is probably worse than -20 diopters and said that glasses would not be of any help for her. He registered her with the NZ Foundation for the Blind so hopefully we can get some assistance for her through them. Hopefully we can apply for some funding so she can have a one-on-one care giver for a couple of hours a day to do activities. She had another bad fall in the weekend while out walking since she didn't have someone actively assisting her. She was just holding onto a wheelchair.

So that's the end of the road for us.... I'm very disappointed but I guess this is the reality of having a severely disabled child.

Good luck to you who are reading this. I'll still drop in from time to time to read what's happpening for others but probably won't post again.

Carleen

[Andrew MacLean]

It's been a while since I was on the forum so here's an update.
I saw the private specialist yesterday with Jennifer and he said he wouldn’t do the cross linking on her for several reasons.
1. Her age. Since she is 31 he says that the KC would probably not advance much more.
2. Measurements. To do the cross linking he said he’d need to prove her KC was progressing and to do this would need several GAs to enable him to do the measurements. Again, not an acceptable option due to the risk of multiple GA.
3. Her KC is so bad that he didn’t believe that doing XCL would give her any benefit.
He has estimated that her vision is probably worse than -20 diopters and said that glasses would not be of any help for her. He registered her with the NZ Foundation for the Blind so hopefully we can get some assistance for her through them. Hopefully we can apply for some funding so she can have a one-on-one care giver for a couple of hours a day to do activities. She had another bad fall in the weekend while out walking since she didn't have someone actively assisting her. She was just holding onto a wheelchair.

So that's the end of the road for us.... I'm very disappointed but I guess this is the reality of having a severely disabled child.

Good luck to you who are reading this. I'll still drop in from time to time to read what's happpening for others but probably won't post again.

Carleen

On the question of your daughter's age your specialist is right. The aim of CXL is to 'stiffen' the cornea and corneas stiffen naturally as we get older.

On the question of the need to demonstrate that KC is progressing: right again. There is no point offering CXL to a patient whose eyes are already stable.

If KC is advanced then there are positive dangers in offering cxl.

I guess we all sympathize with you; a possible treatment seems to hold more hope than it ever really could, and when that is taken away we would all feel disappointed. On the other hand, the specialist did not try to sell you a treatment from which your daughter may have had no benefit.

All the best

Andrew

[Carleen]

Well, things have changed yet again! We saw a new specialist today - a Professor of Opthamology - and he says that there may be treatment options for Jennifer. He wants to examine her under GA. If there is nothing that can be done for her then he wants to be sure that he is confident in saying that. He said he'd hate to deny her the opportunity if there was something that could be done. He spent quite a lot of time with us (we came out to a full waiting room) and spent a lot of time just observing her. He managed to get a good look at her eyes by me using her special Robot toy and crackers as a distraction.

Jenn should have her exam in about 2 months. Once that's done the Dr said he'd have a serious think about the possible treatment options - if any. If it turns out that there is nothing to be done then at least we will know that she's had a proper examination at long last.

I am not getting my hopes up this time but I'm really pleased that we have someone on our side at long last to explore all options.

Watch this space!

Carleen

[Andrew MacLean]

that is really good news, and better than you had expected: well done!

Andrew

[Charlottes mum]

Great news. I just posted on Charlotte's topic to send our best wishes to you all too, I should've read this first I think! So pleased, some positive news. Sounds like your team are really determined to go the whole way for your daughter. As it should be. Well done you xx

[space_cadet]

I read your inital post whilst away via my fone and couldn't find the words to say what I wanted, just read your update and smiling that they are not willing to leave your daughter and your family unsure if there is nothing they can do

What a wonderful person you saw today, I shall be keeping you in my thoughts n prayers that there is something that can be done to help

lots of love
Lea
xox

[Carleen]

Thanks everyone. Yes, it's wonderful to finally feel we have someone who is prepared to try for Jennifer. He's a lovely kind man and I can thank my friend (Nurse manager at the Hospital Eye Outpatients) for recommending him. As I said earlier - I'm not getting my hopes up this time but just feel very happy to be able to get some real information about Jenn's condition.
Carleen