Honest Opinions Please

[Mumononeleg]

Hello,

This is my first post so sorry if I have posted in the wrong section.

My almost 12 year old son was diagnosed with KC in Jan 2014. We have been told that he has it in both eyes but at the moment his right eye sight is normal. His left eye has started to deteriorate. he has been given glasses as they are reluctant to give him a contact lens due to his age but his right eye is very much compensating for his bad left eye.

We were referred to St Thomas' hospital to discuss cross linking. The consultant highly recommended today that he has it done then informed us that it is not available on the NHS in our area.

We are looking at paying to have it done privately but I am looking for reassurance/opinions that this is the best action to take. My head is swimming with the possibilities of a cornea transplant in the future and vision problems. The consultant also said that he is very young to be diagnosed and there is a strong possibility that his eye will deteriorate faster due to his young age. The cross linking seems to be the only chance of halting it but I am very worried that it is not licensed on the NHS and could there be any long term complications due to the procedure.

Sorry for my long rant and thank you for reading

[kieran19685]

Hi

I haven't had cross linking but I didn't get KC until I was 21, I understand that the younger KC is detected the worst it will get in all probabilities.

Cross linking is a safe procedure and I would recommend you explore these options. A life without contact lens would greatly improve your sons quality of life an give everyone peace of mind.

Although I get on well with contacts I wish I didn't have to wear them.

Thanks

[Andrew MacLean]

Crosslinking will not guarantee a life without contact lenses for your son, but that does not mean that it is not worth exploring. Take advice from your NHS consultant. It may be possible for the procedure to be offered without cost to you. Even if you do have to go private, your NHS consultant may be able to nudge you in the right direction.

All the best.

[CrippsCorner]

It may be possible for the procedure to be offered without cost to you.

How would you go about this if it's not on the NHS in your area? It's not here and I'm trying to get funding via CCG but atm it's at the 'we will get back to you' stage obviously rather annoying when time is a key player here.

[Libby]

Hi there - I was diagnosed in the 80's and would have jumped at the chance of cxl if it had been available back then. I would go for it without a doubt x

[Lia Williams]

they are reluctant to give him a contact lens due to his age

I am surprised that they are not giving him a contact lens because of his age. At his age he should be perfectly able to cope with contact lenses and apart from making sure he knows how to care for them properly his age shouldn't be a problem.

It would be worth asking at the next appointment why they are reluctant to prescribe them (and it could be better if your son asks the question - as it would show his interest in trying them). It could be because with RGPs people need to build up wearing time so they are only really suitable if worn every day. I did read somewhere that people who only need one lens are less successful wearing contact lenses than those who need two. There are other types of lenses. An ordinary disposable soft toric lens might give him vision similar to the glasses which might preferable as it wouldn't needed to be cleaned each night. Do ask the optometrist what the corrective options are for your son's eye.

Lia

[Mumononeleg]

Thank you everyone for your replies, they are much appreciated.

This is all very new to us so we are trying to get as much info as possible. My son is booked in and going to have the cross linking done next month.

Kind regards

[Alison1]

Hi
my son as just been told he has KC. He has just turned 20 and he's always had good vision up till a month ago in both eye's . Treatment isn't available on the NHS in our area, we'd have to get referred to another area and then be monitored to show it's progressing and during this time his eye sight will be getting worse, so to me it's a no brainier he needs a treatment to arrest its progression now to save his sight as it is now, not what it will be in 12 - 18 months time. So we are going to have the cross linking done privately next month. We've been to see 4 consultants and have researched all the methods available. (Epithelium off isn't the only method available) so good Look we will be thinking about your son.

[Andrew MacLean]

You can ask for a referral to a hospital where cross linking is offered on the NHS

[CrippsCorner]

Whilst that is true, 'referral' unfortunately doesn't mean 'funded' I know this as I'm going through it atm!