really don't know the way forward

[Libby]

After a pretty shocking eye appt on tues when my daughter was told her right eye had rapidly deteriorated in the last 2 years since she last attempted contact lenses (2 years ago she was reading 5 lines down - on tues they struggled to get her to read the 2nd line).
We have now been given an appt for another attempted cl fit in December to see if another type of lens would be more successful and immediately after a appt with a consultant for him to speak to her about a transplant.

The problem is about 3 years ago before she had even seen the optometrist he was suggesting a transplant - now my daughter has lost her confidence in him. I really like the contact lens dept but if my daughter as lost confidence in the consultant then obviously this is not a good thing.

Don't know where to turn - I'm worried sick that it is going to come into her left eye - do we get cxl done now in the hopes of preventing it?

Do I ask for a second opinion with another consultant - but would this mean changing hospitals for cl treatment.

just hoping they have a lens which will give her some sight in that eye - I have managed to find a topography which was done over two years go which said her eye was 305 thickness - it won't be that now because apparently it as deteriorated badly - I'm still praying that she can be fitted with a scleral - really don't know which way to go - December seems a long way off.

Aparently when we go in December they will do up to,date topography and this will see what the current thickness is.

Feeling stressed

[Mousework]

I spent over 14 months being told my sight problems were in my head, because my consultant missed an important remark from the nero ophthalmologist. Then the head ophthalmologist refused to redo transplant because physical there was nothing wrong. When i ask for write up of what happened for a second valuation, they rediscovered the remark from nero ophthalmologist which lead to an another ERG(worse experience ever). Then the retina ophthalmologist told me I have inherited, degenerative retina disease.

Point i am trying to make, the consultants do make mistakes. From my experience you need to stand up and fight, Have they tested your daughter retina?

[Anne Klepacz]

Hi Libby,
Some youngsters with KC do seem to progress more rapidly than average. But it's obviously a blow to find your daughter seems to be in that group. It's certainly worth getting a second opinion to reasssure yourselves that all the right things are being suggested.
All the best
Anne