Anyone’s child had corneal graft or CXL for keratoconus?

[TheCountessofFitzdotterel]

It’s a long shot because I know it’s not very common in kids but anyone else’s child have either of these procedures?
Ds2 (13) has just been diagnosed with very severe keratoconus in one eye and less bad in the other. The specialist at Moorfields says he is going to need a corneal graft in the bad eye and CXL to prevent deterioration in the other.
It’s a bit of a shock because we knew nothing about it till I took him for a routine eye test last week and it turned out he could barely see anything with his left eye and now we are all getting our heads round this.
DH has keratoconus but very mildly.

DS has had crosslinking in both eyes
He was about 19 for the first eye and a couple of years later for the other
found age 11 in routine school eye check
We live in Wales and through perseverance got him referred to Bristol eye hospital
Op very successful, he has to wear thick glasses , works in IT and can drive

Ah thanks Veryfishy, that’s good to know.
How was the recovery time?
DS’s big love is animation so he will need good enough eyesight for that but driving is always useful.

He recovered really well , quite painful straight after the surgery , and he didn’t want to open his eyes to put the pain killers eye drops in , but he did and they worked really well
From what I remember he had to spend 24 hours resting in a dark room ( he had just started Uni , and took medical leave and restarted the following September)
The second eye , he came and stayed with us for a week , and again recovered really well

Once you start talking to people about it , it’s surprising how many people have it , DS one school friend , one of my friends DD , one friends DS one older man in the village all have it and one had surgery on NHS , 2 private and the older chap not treated

It does seem to be quite common. A friend of mine at university in the 1990s had it very badly and it was really getting in the way of him finishing his PhD because he could only tolerate his contact lenses for an increasingly short time every day.
Looking back I am not sure why he wasn’t offered more interventionist treatment (he was offered white stick lessons!) but perhaps although corneal transplants existed they weren’t as good as they are now.
My memories of his experience made me very worried when we got the diagnosis last week but it seems treatments have improved hugely in the last 30 years.

Yes we found out last month that our 11 year old DS has it.
There's no family history and he appears to have none of the risk factors, so it's been hard to process. We see the specialist again next month and if it's progressed, he'll probably want to do cross linking. It's mild at the moment but he'd want to lock in the better eyesight as I understand.
I've struggled to think about much else since we found out.

I’ve got one in one eye. It was done in my early 20s. My other eye will also need a corneal transplant in the future. I have the same condition in both eyes and as far as I’m aware there’s no family link.
The operation was fine and quick. Recovery was harder as I’d to wear a patch for about two months afterwards for most of the day.
Funnily enough I was pain free 24 hours after the operation.
I struggled with the brightness for some time afterwards as everything was so much clearer and colourful.
A corneal transplant is the only type of transplant where a rejection can happen at any point in the future. I’ve had a threatened rejection following an eye infection but it was quickly dealt with by the eye clinic who prescribed steroids and various drops. I only mention this as I’ve to take extra care of this particular eye forever. Any pain or discharge needs to be looked at urgently even if ten years down the line.

Hi

i I know this is an old post, but it seems it is a rare topic.

we have just found out our 15 year old son has it. He has been wearing glasses for 2 years & his optician referred him last year.

I have found it really tough finding out, the Dr basically said it caused by itching your eyes too much? I have not really noticed my son doing this, so I feel terrible.

Has your child started any form of treatment? We are being referred to a specialist hospital, but havent really been told many options at this stage.
just very worried & it took 9 months for the 1st appointment.

Hi!
Sorry to hear about your son’s diagnosis.
My son ended up having the corneal cross linking in both eyes. He had a painful few days post op and it was a massive faff doing all the different sorts of eye drops but it was straightforward and there were no complications with recovery.
He still has no useful vision in one eye but as he manages fine with one everyone agreed there is no hurry to do a corneal graft. The option is there for the future.
There is a keratoconus Facebook group, have you found that?

I have just reactivated my Facebook to join the group thank you!