cateracts in children

[coffeekaren]

Hello all - some time back I posted about my ds due to have an eye test - well with missed referrals etc we finally got an appointment yesterday. The childrens centre were great - ds giggled alot when wearing the glasses but we got through it. The devastating news is that he has cateracts in both eyes - and is only seeing though a cloud of mist - he is nearly 3 and we are down to seen a moorfields consultant next week. This is the first I have heard of cateracts in children and does anyone have any experience of what we are going to go through - but to be honest am very nervous for next week. Thanks

Bumping for you. And sending my best wishes.

hello

I found some information

here

I know it's hard, but try not to worry too much. If you are being seen at moorfields then you are being seen by people who are very experienced and who know what they are looking at and will be able to give the best possible treatment for your ds.

Fwiw there are congenital cateracts on my dh's side of the family. My dh hadd his removed through several surgeries as a child. He is now registered partially sighted but wears contact lenses and doesn't use any adaptive technology at all. The only thing he cannot do is drive a car. But it's worth remembering that my dh is nearly 35 and surgery has changed since then.

Also it will depend on the kind of cateracts as to the kind of intervention that is required.

Are there any sight problems in either of your families?

Hi thanks for the info and wishes- I am trying to keep calm until next week but also to write down all my questions as me and dp have tendancy to be very quiet in such situaitons. The only heridatary thing I can think of is my mum and aunty both had cateract ops in their early forties. However next week they said we would have a pediatician check him as well. I am a worrier by heart and really sad he has been coping with this for so long but also he must me a coper(spelling) to live with this for so long -

Hello. Dd3 was born with a partial cataract in her left eye but so far it's not really affecting her vision so the doc has decided to leave well alone until it does. Treatments and outcomes can vary hugely, Moorfields know their stuff (a friend takes her ds regularly and only has good things to say about them) so will be the best to advise. It's standard practice to be seen by a paediatrician after this kind of diagnosis just to rule out any other associated problems or causes, so hopefully will give you a little reassurance.

Your ds sounds like a happy little chap and you may well find he takes most of this in his stride, it's amazing how adaptable children can be. It's usually us as the parents that do all the worrying. It may be worth asking for a referral to the sensory impairment service in your area (comes under the LEA but they work from birth upwards) even if it's just for a short time. The service here has been incredibly supportive and is very good for translating doctors letters into simple english.

For more info, you could look at this they also have a parent support group.

Hope everything goes ok next week, fingers crossed for you all.