Has anybody any experience of cataracts in children and treatment?

[TooTicky]

My ds2 (6) has some cataract forming following eye injury and operation. He is being referred to a specialist but I just wondered what we might expect.

Thank you

Yes, my DS has congenital cataracts. There's a support group we've set up pretty recently at childhoodcataracts.org.uk. We have an email support group you can join by emailing the moderator at [email protected]

The outcomes often very good for children who have cataract surgery as late as 6, although it will obviously depend on what other eye issues your DS has (if any). By 6, his eye has already done most of it's growing and his brain has done most of it's learning to see. The surgery's very straightforward and not painful, huge numbers of drops afterwards are a PITA - but it's easier to go into detial on the email list. It could be trickier if the damage to your DS's eye makes it hard to use an intra-ocualr lens - he would have to use a contact or spces with one thick lens if that's the case - he will have to wear specs after if he doesn't already so his eye can focus. Something of a postcode lottery on some aspects of care.

The Canadian PGCFA has a good website www.pgcfa.org/ - there's a lot more info on the Childhood Cataract Network Website about other resources. Most of it is more about congenital cataracts though.

Oh no, not MORE eye drops!!!!!

Thank you very much, that is very helpful indeed

no direct experience of cateracts but I know all bout eye drops! and if you can, use ointments instead. most of them don't sting so the child is more likely to accept it. also when you get used to applying them into the lid underneath the eye its so much easer and much more comfortable for both of you.

as the teletubbies have theirs first dd even lies down willingly for her ointment. she's almost 2.

I'm a lifelong eye medicine user and I will insist on ointments for myself too.

Oh yes! LOTS of eye drops - sorry. I think some surgeons will let you have ointment overnight but I haven't heard of anyone not having to have endless eye drops after surgery. Children's eyes have such powerful inflamatory responses that all the drops are to stop the damage that inflamation would cause and they're very necessary. Surgery for cataracts caused by trauma is a little more specialised I think. There's also the possiblity of having to do some patching if the damaged eye has become at all 'lazy' to get it back up to speed.

They may advise against surgery in some unilateral cases where they don't think there's much liklihood of gaining more vision as a result.

I'd advise getting in touch with a Qualified Teacher of the Visually Impaired (QTVI) if you haven't already as your DS will be getting to the stage where he needs to see what he's doing in school and there are some issues even with one 'good' eye because of the loss of stereopsis, so things like positioning in a classroom, sharing books and computers and some aspects of PE or things like steps in the school that he could fall down should be assessed properly. Also consider claiming DLA if you haven't already.

Ointments, right

We have done lots of drops....
ds2 had a pencil blowpiped, at speed, into his eye and it lacerated his cornea. He had it stitched and then hasd the stitches removed in two stages, early, as they were irritating him.

Blimey Tunicate, I wouldn't have thought about half of those things!!!!!

Urgh - that sounds really painful - your poor DS. Mind you, it sounds like it won't be so complicated surgically; it's where things have gone right into the eye and damaged the bakc of the lens capsule that it gets more awkward usually, so it does sound like there's a good chance they can get good results.

I thought of a few more things;

I notice from your profile you're in England; your DS will need glasses that have a bifocal or varifocal lens in that eye (the artificial lens they put in is rigid so it can't focus like a natural lens and neither can a contact). If he has an IOL at 6, they should be pretty thin glasses, so not unattractive. Bifocals have a line, but are easier to get the fit right on a child which is very important. In Wales you can have varifocals on the NHS so you might be in for paying for the things once he's old enough to care what he looks like and doesn't break so many pairs of glasses. You may also find that your DS may not see so well in bright sunlight with his affected eye - watch out for it 'cos they usually forget to tell you. Scarring on the cornea and after the cataract surgery causes scatter and means you might find he needs prescription dark glasses - these should be available on the NHS, but you have to fight tooth-and-nail to get them in some places.

Some parents in the US use sports goggles etc, especially if vision in the affected eye isn't so good in the long run - the lack of steroepsis makes clumsy injuries more likely and they're more concerned that nothing happens to the 'good' eye. Others feel that's over-cautious.

Your DS will need regular eye pressure checks afterwards for life as the surgery can sometimes cause glaucoma - but the risk is not too high for a 6 year old and it's just the puffer test they do. If his other eye's OK he should be able to drive, whatever the outcome with this one.

Thank you, you are very knowledgeable!

Yes, I was wondering about the possibility of prescription dark glasses as he is suffering a lot with the sunlight, although he isn't actually using his left eye as he can barely see anything with it atm

I have been quite amazed that his eye problems haven't affected his physical confidence or abilities. Am hoping this will continue.

I really appreciate all the information - it will save me feeling quite such a dunce at the hospital

I wrote a lot of stuff for our website, so I've had to find out about lots of things that aren't totally relevant to my DS.

There are frame types available (I don't know the detials but could find out) that are wrap-around sunglasses that will take a prescription lens, sized for children. If the photophobia really bothers your DS, you may need to get hold of some - quite a few children in this situation find normal glasses let more light round the side than is comfortable. If he doesn't need anything so dark you can either get clip on sunnies to fit his glasses or you can get the lenses that change colour 'transitions' or whatever they're called (they don't change fast enough for a lot of kids).

Whatever you do, go for an amber or brown tint not grey - it seems to work much better for children experiencing this.

Another tip is to give him a baseball cap to shade his eyes; it's very effective, and get permission for him to wear it indoors if he needs to. A QTVI will be able to sort out things like blinds on classroom windows and advise teachers on making sure he's not subject to excessive glare.

That's v good that it hasn't knocked his physical confidence. I hope your appointment goes well!