hi,

well finally recovered from our trip to birmingham, well one good thing is he doesnt have retonablastoma which is eye cancer thank god!!!

we need a mri and eeg soon to to check the function of his brain and everything

not much can be done for cadens poor sight as it is the nerves, its a developmental thing he never developed properly

but at the moment im just happy  hes healthy

Just wanted to wish you luck and send a cuddle. I hope the prognosis is not as bad as first appears and that he fights whatever he has to. Love and a hug. Sarah x

So pleased they've discovered what was up with his eyes. I hope it all goes well for Caden on Friday and that it isn't too hard for you!

Best wishes!

the hospital rang me earlier next friday is cadens op date at birmingham hospita;l

hi every1, a little update.

on tuesday 2 days ago caden had his exploritry op to have a better look now we are been refered to a much bigger and more specialist hospital they have spoted some form of tumour at the back of cadens eye so he has quite a few problems really we are goinh to birmingham when they organise a date a long way for us but i dont care if its whats needed xx

just sending love and hugs - thinking of you.

Just reading your post. Even though I haven't had this experience. My ds had an op at 4 days old where he was put under general anathstetic (sorry not sure of spelling). He had a drip in but as for a day thing I don't know if that must depend on the op because he was in and out in an hour. Took him a while to come round but baby's are sleepy anyway. Hope your LO's ok, mine's a different situation but I know how scary it feels. All the best .

thanks ladywatts that has helped me in a few ways.

does any1 one no when they put a youbg child under if they have to put a drip in ect as i got told him going under would be a day case.

Hi there,

My niece (now 6 and a half) was diagnosed with a bilateral optic nerve neuropathy about 4 years ago - her mum had taken her to the doc re a squint and she was referred to hospital consultant who took one look at her and sent my sis home to pack a bag for staying in (panic stations as he hadn't said why and of course you always assume the worst - we thought she had a brain tumour or something). They did loads of tests to find out how much her vision was affected, including CAT scans and MRI which was hideous as they has to knock her out for both) and they put drops in her eyes to dilate her pupils which were stingy (she wears sunglasses after any drops now which she thinks is v cool!). The consultant said it was likely she would eventually go blind in one or both eyes. She cannot see things straight ahead but can see things at  the edges and she has to wear glasses. The consultant also thinks she may be colour blind.

She's now at school and has input from the visual impairment unit, who advise the school on what they need to do for her to support her properly, e.g. she has books with huge type and has recently obtained a magnifying glass to help with books that don't come large type. They also worked with staff at her nursery.  She goes to the hospital once a year for a check up (luckily her vision hasn't deteriorated).

What I really wanted to say was that even though she has this condition I think it actually affects the grown ups in the family more - we know what kind of challenges may lie ahead for her and what it would mean to lose your sight but she has never really known any difference - it's just how she sees the world and she doesn't really know that other people see it diiferently. She has just got on with things and has compensated for her poor vision. You wouldn't really know she has difficulty seeing if you met her, although she does tend to peer closely at things and often looks at things side on.

I hope this has helped but wait and see what the hospital say - it might not be so bad (easy for me to say, I know)..

bump

HI Alison,

I am the lady that sarah (AK2004) mentioned in her post. My 2nd child Luke (who is now 14 months) Is completely blind and has been since birth. It does not matter what exactly is wrong with your lo's eyesight the shock, disbelief and grief you experience when it is first diagnosed is i believe the same for everyone it is a natural reation.

I knew there was something wrong with Luke's vision when he was 5 weeks old but it took till he was 5 months for a diagnosis to be made, mainly due to the fact that none of the specialist had ever come across infantile blindness for no reason as Luke's condition is pretty rare.

If you are anything like I was back then at the moment you may only be able to focus on the disability you have just been told your lo has although of course you still love him to bits. Do not feel guilty for any of the negative or sad feelings you are feeling right now you have to experince all that before things get better. Believe me a year ago i was a complete mess but now i am enjoying life. You may have that feeling right now that you will never ever enjoy life again as this is such a sad thing that has happened to you and your family but you will. Please feel free to message me if you want to chat, I am also happy to give you my personal email if you like. I know our childrens conditions are not the same but the effect that it has on us is and i am happy to talk to you more about things if you like.

Suzie

thank you for your replys ladies

 buxenwench where is moorfields?

i dont no weather to get a second opinion really as they said theres very little that can be done for the optic nerve

I dont know a great deal and I dont want to give you false hope, but dont freak out yet. I had dreadful dreadful eye problems at that age, had 2 operations, eye patches, etc, had a really bad squint and all of that and now at 32 years of age wear just contact lenses, in a +2 and a +2.75 (pretty low prescription), no squint (except when I'm drunk lol) and apart from the fact I dont have binocular vision (I see separately out of each eye rather than the 2 working together as a big wide picture - not that I know, the brain makes up the middle bit, apparently) and I can see so well I put one contact lens in the other day, forgot to do the other and didn't notice till the end of the day (!!)

My mum was told I would have all sorts of problems and may even be legally blind.

They just can't tell at this age.

My son was recently misdiagnosed with hearing loss. A few weeks of major worry and it turns out he has perfect hearing.

Hang in there - it will possibly blow over and if there is a severe problem there is probably a few good procedures they can perform if you so choose when your lo is a little older. Moorfields Eye Hospital, if you have the funds for private, have some very very talented consultants - some of the best in the world. Hang in there, see how it pans out.

Sorry I don't know anything about your lo's problems but I do know slightly what it feels like. My little boy (One tomorrow!) was blind in both eyes for the first 7mths, we have been fortunate in that he now has sight although there are still question marks about how much he sees and if he has full range or possible tunnel vision. They think he had something called delayed visual maturation.

The not knowing was the worst bit and I know I spent lots of time thinking about what the future might hold for him. My lo also has development delay so we have a long time to go before we know what he may be able to do or not do in the future. We don't go back to see the eye specialist again until September.

All I can say is they have found out early and you are sure to get the best possible treatment and help to ensure that your lo has the best chance whatever he has een dealt. I have found everybody involeved in my lo's care to be amazing and I have never doubted anything I have been told although you will probably find getting information out of anyone quite a struggle!

Good luck and I hope they find his problems are not as bad as first suspected.

There are a few people on here with babies with eye problems, one girls lo is totally blind but you will find people don't post as often on here as they do in other forums so be patient and keep bumping up your thread till you get a reply!

Big hug, Sarah Xxx

please any1?

hi every1 i didnt no where to post this so sorry if it shouldnt be here

at 3 mths caden was refered to a eye specilist today we had the appointmen

he went because of a squint in both eyes and a dancing of the right eye

well after tests ect, they found his optic nerves are deformed and they said we cant say wat the futre means for his sight im so worried!! i said could he end up blind they said possibly!!! he can see now but how much i dont no!

there going to have a meeting to see wat the next action is but they think they will put him to sleep to have a even better look

i dont no wat to d really or wat to think does any1  no anything or wat ever

xxxx