Eyesight - Keratoconus and DS

[amberlight]

People here may remember that our lovely DS (now a towering teenager) has had his share of challenges from ASC and from dyslexia etc.

In the last few months he noticed he was losing the ability to see out of one eye. It turns out he has something called Keratoconus, which means the outside see-thru lens bit of the eye is becoming totally the wrong shape and can't focus light any more. It usually spreads to the other eye as well. No-one has a clue what causes it yet.

The Government have decided not to pay for operations to correct it. They want us to wait until corrective contact lenses don't work any more and when he's effectively blind, then they'll pay. . He's in the middle of his A levels - he doesn't need to be effectively blind now or when he's at Uni (if he gets there...)

Or we can pay privately. But even if we do, there's risks as it's fairly new surgery: it can fail, it can leave the eyesight with permanent problems that mean he wouldn't be able to drive. Or we can wait for really major surgery with a transplant and all the problems that might go with that.

We are seeing the specialist again in July for his opinion. What do we do?? It's so nerve-wracking for us as a pair of autistic-spectrum parents, and I don't want to get the decision wrong. DS simply doesn't know either. Urk.

I think its up to you really if you have the money to pay for the operation and feel it would benefit you ds now and he wants it done then go for it. My dh has keratoconus (it runs in his family) and has to go down the route of waiting as we can't afford the operation, he brother on the other hand has had the operation but he lives in the US and it was done on his health insurance I think.
I hope you don't mind me posting I don't post much on this board but do read for help sometimes as I have a ds going through assessment for AS.

I mean't to add its the transplant that dh's brother has had he didn't try corrective surgery first.

Hi Amber. keratoconus is something I have a little knowledge of. As you know it is a condition where the stroma of the cornea ( the stong layer in the middle) thins especially near the centre. This allows the cornea to distort, forming an imperfect optical window. A rigid contact lens put over the surface 'covers up' much of the distortion and usually gives reasonably clear vision. KC tends to advance in fits and starts in adolescence/young adult life and then naturally stabilise at some stage in middle life. Everyone is different but that is the general pattern. As far as I know there is no operation or medication or proceedure to 'correct' or cure KC. Which operation are you thinking of?
These are my thoughts.
It sounds as if your son is around 17 and as yet only one eye shows signs and symptons of presumably early KC. Presumably the other eye sees normally. Is your son able to wear a contact lens to allow him to see well with his KC eye? If he is ( or if with the two eyes together he manages well) there is something to be said for waiting. First of all he is in the middle of A levels and surgery is surgery. Secondly if the KC has only just been diagnosed there is wisdom in waiting to see if or how it will progress. Thirdly there are visual risks with surgery - and it is possible that different problems (distortions) may result. Fourthly - new techniques sometimes stand the test of time - some do not. And in the KC world many have come and gone hense the reluctance og the nhs to jump in early. Fifthly things often change quite slowly in KC so there is time to think!
I would get the opinion of 2 ophthalmomolgists who specialise in KC - a rare breed if possible. I say 2 because there is a tendancy for surgeons to favour surgical options whilst those who manage KC nonsurgically favour that view -and a balanced view is required here. Maybe ask what they would do if it was their teenage son with asd?
Must rush. Good luck with your decision!

Sorry awful spelling - was rushing to get tea!

Many thanks for the words of wisdom.

We've been told there's a new surgical procedure out, which stabilises the lens so that it can't get worse, so that's the first option we've been given. The others are surgical implants and transplants.

Are you talking about collagen crosslinking (to strengthen the cornea), or intacs/ferrara rings (to reshape the cornea)?

Sorry, I don't actually know much about either, except that they are available treatments for keratoconous, because they were in the booklet on treatments offered at the Centre for Sight in East Grinstead! Is magso aware of either of these procedures and their risks? If they are both new procedures, then I'd want to go to someone who already had considerable experience in doing them, and a fantastic reputation in corneal eye surgery, even if I did have to go privately to do that. As for whether I'd be willing to try a relatively new procedure in the first place, I think I would if I had been told my condition was rapidly deteriorating and the end-case scenario was likely to be a corneal transplant one day, but not sure what I would say if the possible long-term consequences were not so dire. I might still be tempted in that case to try the option of trying to strengthen the cornea so as to slow or stop the continuing development of the condition if I could afford it???? Not an enjoyable or easy decision whatever the scenario, as whatever decision you make, you are taking a risk to a certain extent because no-one knows for certain what the natural course of the condition will be, so you have to choose the option that you think will leave you feeling least bad in hindsight, whatever the consequences!!! Is it a decision that could feasibly be held off for a year or two, or could that make it too late for the newer treatments to be effective?

Looks like his eyesight in that eye is getting worse fairly fast, so not sure how long we have. It went from -1 to -6 in a few months, I think. Consultant again in July. Yes, the collagen thingy sounds like what we were told was one of the options.

Yes sounds like collagen cross linking.

I will try and look at up to date results. Early studies looked promising, will report back Amber.

Thanks....it's appreciated