Hi

Yeah millie's to get surgery in her eye to straighten it now before she goes to school (long way away yet!) and i have to show her alot of black and white things to try and get her to focus

Thanks all for your support and i will let you know what millie's MRI results are.

Glad to know that i'm not alone.  Glad i found this web site coz it does give much needed support

Kaye  xxxx

oh golly - have they said what they are going to do about her good eye being lazy?

My little girl is coming up to a year. Her problem is again slightly different.  She had a bleed on the right side of her brain around birth and as a result appears to have no left visual field - that is she can't see the left hand side of her vision in either eye.  It's difficult to say how bad it is at the moment or whether it will improve, but she has been referred to the visual impairment learning team to see if they can help.  her problems are generally related to the injury generally. She doesn't use her left side and if you approach or put toys to her left she doesn't see them at all. 

No exactly the same but simmilar I suppose. My son (now 14 mths) was blind for the first 7 ish months, didn't follow even lights. About 7 mths he started to get some sight and would follow bright lights and over the space of a few months his sight got better and better. They have diagnosed Delayed Visual Maturation. He has been under the peadriactic consultant, opthalmologists and eye specialist since he was quite little. (sorry I can't spell!) We go back again to see all of them in September.

He has quite a few problems they are investigating and he will be having a propper brain scan to look at whats going on. He pushes things into his left eye all the time and in photographs his left eye is always more shut that the other. He can see things to pick up now but doesn't seem to have full range (almost like tunnel vision) They think he is delayed in general development by at least 3mths at last app although many of these delays could be to do with his lack of sight in the early months.

He also uses his ears to see! His hearing is amazing and has def compensated for his sight issues.

I am hoping now he is a bit older they might be able to do more tests to let us know just what he can and can't see and obviously if there is anything growing behind his eye as the last app they were just happy to see some sight coming back!

I know it hasn't answered your question but just wanted you to know you are not alone.

Good luck and I hope things improve.

Sarah Xxx

Hi,

I've copied this from another thread I replied to...

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'm sorry to hear about your little girl but it's good that it's been spotted early enough and hopefully she'll get the support she needs.

Feel free to pm if you have any questions you think I can help with.

My daughter is 10 months old, it first came about when her health vis was concerned that she wasn't fixing and following on things.  From about 4 months old she started seeing an opthomologist (think thats how you spell it) and an eye doc, they agreed she had to wear a patch on her good eye (as she also has a slight squint) to correct her good eye, on the docs advice i did so but wore patches as often as they said and it made her good eye lazy and her bad eye good!!!!

She went for MRI on tue to rule out anything as she had a slight cist above her left eye (bad eye) she can only see maybe about a ft in front of herself but nothing else, she uses her ears to see and she still has no hand eye co-ordination as she obviously can't see much.

Has anyone else had same experience????

Millie's mum

Kaye