DS very limited vision in one eye

[Uninspired777]

Hello, I could write loads on this topic and I am feeling really alone and desperate with it and unable to get answers. We live abroad, last year we discovered that DS has very little vision in one eye, I feel terrible that we didn't notıce but I have to move on from that and ıt really isn't that noticeable a lot of the time.

He has a very unusual condition with his retina and nothing can be done about that. The condition has caused him to develop a lazy eye because the brain prefers the use the other eye. ( as I understand it).

The left eye is -19 diopters and the right eye is normal. We were told he should wear glasses that are -10 in the left eye and clear in the right to stop the lazy eye worsening.

Six months or so later we moved to another country and took him to a pedıatrıc eye specialist, the fırst of several. I will bullet point the pathways that have been suggested for clarity because my main problem is that every dr we have seen has suggested a different course or action/non action. They all more or less agree with the problem. They say he has between 10 and 30 percent vision in the left eye, depending on the Dr.

-The glasses are pointless at best because the brain cannot process such different information from the two eyes.

-He should patch, while wearing the glasses building up to 6 hours a day.

-He should wear glasses with matte glass in one lens instead of patching.

-He should have a contact lens of 19 diopters in the left eye as the brain will be able to meld these two images and it will retrain the brain like the previous 2 options.

-We should do nothing as the potential for improvement is so tiny, because of the structural issues with his retina. Having v little vision in one eye will hardly impact his life.

DS hates the glasses, really really hates the patches and matte glass glasses (understandably). He is on board with the whole process in theory, he has been so brilliant but the the reality of the patching he finds awful.

I can't keep taking him to different Drs but I just can't help feeling that I want some certainty around whether there İS even anything we can do. I will accept it being really hard, the patching etc İF there is a reasonable possibilıty that this will improve the vision is the left eye, but I have to consider the practicality of it and the effect the patching has on all other aspects of his life (just starting to learn to read, socialising, being active and independant). He is the middle one of three (7,5,4) and I am often on my own doing after school time so it is a real challenge to get him to patch with the obvious needs of the other 2 at that time.

I have enquıred into having an online consultation with a pediatric eye specialist in the UK, it is expensive but I feel it could be worth it.

Thank you so much for reading, I hope someone does! I just wonder if anyone else has the experience of a child with very different eye sight in both eyes? Should I persevere with (currently not successful) attempts to 'do something' about it? Or should I accept this is how it is and let go of all of that given that (based on my amateur research)he can have a totally normal life as is? I keep wonderıng whether my need to 'do' something about it is just me trying to find some control and help and feeling guilty that I would even consider doing nothing when there is the possibility of trying something?!

Hi I’m sorry you’re dealing with this. I’m not a medic but my son had lots of visual issues from a young age & I understand a bit of what you’re going through. How old is your son?

Please don't feel bad about not noticing - I would have sworn my son had brilliant vision until about 10 seconds into the appointment at the eye hospital! Turned out my son was reliant on his "good" eye, and vision was pretty poor in the other. He wore a patch and glasses to force him to use the bad eye for nearly 2 years. In his case we saw massive changes and his vision improved in the bad eye at every appointment so we persevered. He was really brave, and whilst hated the patch and glasses combo - he stuck with it. He preferred the patch over the glasses rather than the sticker on the eye.

I would question if you are not seeing any improvement from the patching. I remember feeling pretty bad at the time for forcing him to stick with it - but in our case it did work. This was 5 years ago, he now wears glasses with 2.5 in the bad eye, and possibly 0.25 in his good eye. He can get away with not wearing glasses but we encourage him to.

I have a bit of a different perspective. My husband got measles as a child and therefore has partial vision in one eye. He visited moorfields a lot as a child and had to wear a patch and glasses and it did improve but he still doesn't have brilliant vision now and wears glasses with differing prescriptions for each eye - however it doesn't stop him driving etc.

My little one has no useful vision in his left eye but good vision in his right, he also has a squint on the left. At the moment we are not patching his right eye as it would leave him with no vision and would probably cause more stress than benefit. if, in the future the squint in his left eye becomes more noticeable he will be offered surgery to make his eyes look more "acceptable". Like your son, you would have to look very hard at him at the moment to realise he is blind on the left as he compensates for his vision really well.

We also didn't realise how bad our daughters sight was until we had our appointment. I could have cried and felt like the worst mum in the world. She started off with just glasses but that them didn't improve her sight. We then patched from the age of 4 for about 18ish months. Started at 6 hours and stopped to 2-4 hours. It has a massively positive impact. She will always needs to wear glasses and the prescription is very different for each eye but with glasses she is now able to use both eyes. We were told if we hadn't have caught it then she wouldn't have been able to drive, but with all the improvements she made she will now. It feels like a long journey but worth it

I had to wear a patch as a child. I hated it. But my parents persisted, and I'm really glad they did: it's temporary and it has made a difference to my eyesight for the rest of my life.

I remember being bribed. There was a reward chart no idea what the reward was, but it worked.

Are you planning to visit the UK any time soon? My son has been under the care of Moorfields Eye Hosp and they’ve been great.

I have no useful vision in my right eye, left is shortsighted with astigmatism but does the job.

I have a coloboma of the optic disc in my right eye right where the optic nerve joins so it allows fluid in behind the macular which builds then recedes constantly, that basically buggered the eye over time. By the time I was 4 I'd lost 40% of my peripheral vision, that has gotten worse and it also caused a retina detachment which needed repairing 3 years ago. My visual acuity in that eye is 6/48 and I'm at high risk of future detachments, cataracts and a load of other stuff.

My left eye I have a coloboma of the retina which doesn't affect vision.

All that being said it's never stopped me doing anything except obtaining contact lenses, no optician will let me have those in case I get an infection in the good eye 😀

Have they said that the patching, glasses etc will likely improve the situation or is it to prevent it getting worse? If they can give no hope or assurance that the treatment has previously shown success then I wouldn't push on it, if however they are confident that the treatment is effective then I think it is important to persevere.

My son has similar issues to yours, though his sight in left eye not quite as poor. He wears glasses with clear glass in one eye, strong lens in the other. His sight in one eye appeared to deteriorate quite rapidly between his preschool eye check and one at age about 7 when it was picked up and we were referred to hospital ophthalmology.
He patched for a while but it made very little difference. He can manage fine without glasses - as you say, his brain seems to be trained to use the good eye only, and the vision in that is excellent - but it does impact his depth perception and we've been advised he should continue to wear glasses, even if only to try and protect his eyes. If he were to damage the good one he'd be in trouble. We've been advised that when he's older he could wear a single contact lens.

Hello and thank you very much for your replies. @BlackSwan he is almost 6, we found out about the condition around 10 months ago. It 's really so reassuring to hear about your experiences. @Zeebeededodah the reason we are not seeing improvement is because he doesnt have it on enough, he just tears it off or removes the glasses. @Bwix yes we have half heartedly tried bribery but I know that if we decide this is the way forward I am really happy to try anything because it is just really worth it. The thing is that his retina is not transparent so the question is whether information can even get through. @starofwonder yes the only thing I have noticed is that he finds catching a ball difficult, compared to the other 2 anyway.

I have one more appo'ntment next week where I will ask to actually see the retina so I can see exactly where the damage is and how extensive.

I really am so grateful to you for replying, it really makes a difference to hear your experiences and advice, I still feel undecided but not as hopeless and alone for sure.

We patched my son to improve his vision around a large cataract in one eye. Things that worked to get him to comply were empathy 'yes, I'd hate to wear it too, it must be scary not being able to see well', saving up treat activities for when he was patched and involving everyone around so we'd all clap and cheer when it was time to take the patch off. Apparently eyesight fixes at a level at a certain age, the brain/eye pathway is established then, so we kept going hoping it would give him a good chance of driving etc.

Our dd was patched for 3 years. There was lots of tears and tantrums but she soon got into it. She will now be able to drive which strangely was a big thing for her!

We wrapped up a 'prize' and then once she had worn it for so many days, she got to open and keep it... that really helped! They also had eye drops that blur their version in the good eye if patches prove difficult. Good luck with everything

Hi, Both my children have squints. My son now 24 has +7 lenses with an astigmatism. He can barely see out of his left eye. He had sticky patches, then material patches which went over his glasses which he preferred for approximately 2 years when he was 5 years old. He wore them despite having moderate learning difficulties. It did not improve the vision in his left eye. He is able to drive and his vision does not affect his job as an IT Technician. I feel very guilty for making him struggle more than necessary when trying to learn the basics at school, but at the time felt I was doing the best for his vision.

@Uninspired777 hey OP was wondering what the outcome was with your son? Currently going through same thing and could do with some advice. How is he getting on?