Hi new here

[mm22bys]

Hi,

I posted on Anniebear's thread but wanted to say hello in case you are wondering what I am doing on this board!

I have a three month old who is showing signs of visual impairment, and would like to get in contact with any body else who has children with the same problem

He had a streptococcus pneumoniae eye infection when he was 3 months old, and now he is being investigated by a pediatric neurologist.

He doesn't track objects well, didn't respond to light at the GP's on Wednesday (but does screw up his eyes if you bring him into bright light), is slow to smile, seems to have normal eye movement and appearance, seems to follow the mobile over his cot sometimes, and he did turn his head last night when I went into the room.

I just can't believe he is blind, but would like to talk to others who may know better if he does have some kind of visual impairment, and if any vision loss he has suffered as a result of the infection is recoverable.

Thx,

hello mm. The special needs board here is really informative. I have a 16 month old son who has west and Williams syndrome. My son is showing signs if visual impairment- we know his eyes are very healthy and it may be a case of as he gets stronger then so will his eyes.

I cant offer any specific info on sight and visual impairment although im sure someone here will have some knowledge/experience but just wanted to say hello.

Hi MM, am new here too - my dd is visually impaired we don't know how much she can or can't see only time will tell as she starts to communicate with us ( but like you;re ds she has normal eye movement and appearance and reacts to lights being switched on and off although she hasn't had an infection, we only found out about her lack of vision at 12 months )- we have had genetic consultation waiting for chromosome testing and will be seeing paediatric neurologist next week for some answers we hope! - so far we're no closer but learning to live with our new world - my dd is 18 months how old is your boy? Never give up hope - that's what helps me, am going on a day by day process it's what works for me so far x

sorry hun, i cant help you there, but someone on here will prob have some advice for you, i just wanted to say hello and welcome to the boards, and i hope your little mans eyes arent as bad as you fear, does sound positive that he is tracking things though and turning his head, fingers x for you hun. let us know how you get on with his investigations, and good luck xx

Hi,

thanks for the welcomes.

We are still waiting on an appointment with the pediatric neurologist. The hv said yesterday they are still talking about admitting DS. Anyone know if this is standard for neurological assessments?

Lourobert hope your DS's eyes do get stronger as he grows, and Padio, all the best for your DDs appointment.

Hello mm22bys. My dd3 11 months is very short sighted and really can only see just in front of her nose without her glassess on. She has had conjunctivitus quite a few times, but it never affected her sight. She also has a squint and a partial cataract in one eye. She was rubbish at tracking objects too.
Thankfully, our local eye unit is very good and the dr there is great. The dr also does a clinic at GOSH which she refered us to where she did VEP/ERG tests. These tests show whether there is any nerve damage between the eye and the part of the brain which prossess the information. These tests sound scarey but really were no where near as bad as we were expecting and done in outpatients, the GOSH website has a fact sheet on these tests. They really tell you the what the child can see without them reading the chart.
Luckily they found that her only problem is being very short sighted, the cataract they can deal with when she is older, and the squint we are patching every day to improve.
Babies eyes apparently change a lot in the first year of life so if things are picked up early, the more chance there is of improvement. If dd3s problems hadnt been spotted, she would soon be blind in one eye, but now her prospects for the future are good. We have had many sleepless nights over this, so our thoughts are with you.

HI MM.

Im sure its pretty standard to admit children for neurological assessments- I know my son was.

Let us now how everything goes...!

Hi mm22bys, My DS (9mo) has a VI - not the same reason, he was born with cataracts. VIs are so rare that it's often hard to find other families with the same problem. I've found the National Blind Children's Society (NCBS) very helpful and supportive. Sorry to be negative, but the specialists don't tend to want to guess about this stuff. I felt that nobody was telling me anything; I would also think that any vision loss that a very young baby has is not likely to be recoverable as the lack of visual stimulation to the brain in the early weeks/months is so critical. But a lot of babies seem to take a long time to respond to visual stimuli - espcially if they have any sight setbacks (someone I met recently said that her DD didn't seem to be able to see anything until she was 6mo, although she'd had cataracts removed at 6 weeks), they can apear blind for a long time and then suddenly start using their vision. I hope you're doing OK - it can be a really long wait to get any defintive answers about VIs