Long shot but does anyone have a child with strabismus? (squint in their eye)

[IsItMe24]

Just posting on the off chance anyone has experience with this.
My DS was born with a squint in his right eye (so his eye turns inward) which as a result is affecting his vision. He’s autistic so has some sensory issues and won’t tolerate their ‘treatment options’ which have been glasses and eye patches. He’ll just relentlessly take them off. Essentially they’re trying to cover his good eye to make him use the other eye but he has no understanding of this, so quite frankly I understand why he’s distressed when you’re covering the only eye he can see out of properly! He’s now 4 and we’re no further along progress wise. But they’re said they’re the only treatment options available so if he won’t tolerate it then basically he could lose his vision. I just feel this is really unfair as it’s not his fault! So I’m just hoping someone else has some knowledge around this. I’m been trying to push for surgery to correct the squint but initially they said they won’t do that until all other options have been tried first. They then told me they couldn’t do surgery until he’s older as he won’t sit still long enough for them to get proper measurements of his eyes. But today they told me that surgery won’t change his eyesight and described it as more of a cosmetic procedure that I can look into when he’s older if I wanted. But given that the surgery would correct his eye so that it’s straight, surely this would mean his ability to use it is greater than now and therefore this may decrease the likelihood of his vision getting worse?!! Not sure if it’s worth trying to see if I can afford a private consultation just for a second opinion

Hi there
my daughter had/has intermittent exotropia. We were told that patching is actually an outdated treatment plan: teaches the child to look out of one eye rather than eyes working together, and can damage eyesight. Vision therapy was an option discussed; essentially exercises to strengthen the muscles in child’s eye. It was ruled out because she was too young at the time.
It came on suddenly when my daughter was 2ish and then corrected itself when she was about 5; so may be different to your sons cause but to reassure you: that he’s not tolerating patching may not make a difference!

There's an image of a cat you can use with children. You have to look at it and make the two images into one. Would your DS manage this?

I’ve had the operation to straighten my eye, and it is essentially cosmetic. My good eye dominates my vision, and I don’t see very well at all out of my previously squinty eye. I had the operation when I was about 4 years old.

A second opinion can’t hurt, if you can afford it.

My son also has a squint, and what worked for us was to put a fabric patch over his glasses, he also wouldn't tolerate the sticky patch on his skin. After a couple of years of patching, his vision remained stable and we were able to get him off the patch.
If you son doesn't wear glasses you might just have to get a patch on elastic and make him into a super cool pirate.
Surgery isn't recommended at such a young age. Someone we know has a medical Botox injection to stop their squint...

You can ask for a second opinion on the NHS. If your specialist isn't at a large eye hospital I'd ask for this.

If it helps my elderly mum has an uncorrected squint and the vision loss from not wearing her patches as a child - she can remember takingthem off and hiding them.

The only impact in adult life is she wears glasses and occasionally doctors get over excited by her neurology examination finding.

I had surgery for a squint aged 4 in the 1970s and again at age 10. It did correct it cosmetically but I don't have stereo vision and I can't catch or play badminton or see those 3D picture things. I wish there had been more information or consultation at the time. As I child I knew I'd been in hospital to fix my eyes but mum and I only put 2 and 2 together and worked out this might be why I was shit at PE when I was about 25.

I wish someone had said "you could practise catching balls all day" because your eyes mean you're not naturally good at it" or something when I was 11.

Sorry I don’t know what you mean. But his cognitive ability is very behind if that helps- eg he is only just starting to understand single words so doesn’t understand/follow instructions. Which is why I can’t explain to him why he needs to wear his patch.
I’m just really sad for him if this is the reason he may lose his vision! But I’m glad to read that surgery isn’t likely to change that then

Did they say that he would lose his vision? My good eye dominates my vision but I can still see well enough to drive and have no issues with anything in daily life. It’s my short sightedness and astigmatism that are more of an issue.

It is difficult. My DH had to wear the patches himself for a while to convince 4 year old DD it was cool to do. Does he have a special interest? The patches come in all sorts of patterns. Bribery? We let DD use the ipad as long as she was wearing them.

Can you find a social story explaining the point of it?

This is a type of eye physio.

You could look for a behavioural optometrist with experience with ASD. You'd have to pay.

I can recommend one if you want (London).

@IsItMe24 , I’m an Orthoptist , I’m happy to give you some more information/advice if you

have details of his glasses prescription I can be more specific

Ah ok, I’m in the midlands. Perhaps a gp would be able to recommend one that’s close?

They didn’t say he would definitely lose his vision but it’s possible if he doesn’t start to use his eye more (and I’m hoping they just mean the vision in one of his eyes)
Ah ok thats an idea. I’ll try wearing a patch myself and see if it encourages him but I’m not too sure that it will as it didn’t work with the glasses.

That would be great! I’m not sure if I have the prescription but I’ll have a look.

Sorry, it sounds like he might not understand the instructions. If you have another appointment, perhaps you can ask them.

You can only do stereograms like this if you have the potential for binocular vision which some people with a squint don’t

I had this as a child. The patch didn't work so I had the operation when I was 5. It was just cosmetic.

I have very little vision in the squint eye. My prescription is plus 7.5. But the brain balances the lack of vision in one eye and with glasses/ contact lenses I can see perfectly. So I think what you need to do is clarify what loosing his vision means- do they actually mean go blind? Or do they mean very little vision in just that eye?

I was told its hereditary but misses a generation.

Same. It was thought that I would grow out of my squint. I look a pathetic wee thing in my early school photos. I was operated on when I was 3 or 4 - the only thing I remember is being bought a new nightie and dressing gown.

My eyes look 'normal' now, but my left eye is pretty much useless. I can see out of it, but if I just had that eye I would be registered blind as it cannot be corrected. I don't know how much my depth perception has been compromised because this is all I know. I can't see those Magic Eye pictures, but that hasn't held me back!

@IsItMe24

there are lots of different types of esotropia (inward turning in) A lot of children with esotropia are long-sighted and if your son is the glasses are prescribed for the long sight but also to see what effect they have on the squint. For some children the squinting eye will completely straighten with the glasses on but is still seen without glasses this is a fully accommodative squint. For some the squint reduces with the glasses but is still there (partially accommodative) and for others the glasses make no difference ( non-accommodative) there are other types but those are the most common ones. When a child develops a squint the brain suppresses or ignores that eye if it didn’t the child would be seeing double. As the eye isn’t being used

the vision doesn’t develop properly. Patching the other eye forces the brain to then use the squinting eye which will usually straighten up when the patch is on unless the vision in that eye is so poor that the child is still unable to use that eye. Patching does work but it is not easy for the child to tolerate, as far as they are concerned they can’t see as well and therefore don’t like it , if your son can’t understand why he is wearing it it’s no wonder he pulls it straight off. Another option is using atropine eye drops that are put into the non-squinting eye these work by blurring the vision in that eye but they have to blur that eye enough to make them use the squinting eye so it depends what the level of vision is in the squinting eye. There are now some computer apps and games designed to try and stimulate the squinting eye but these are still not widely used and may not be appropriate for your son. There are a few types of children’s eye conditions that can be helped by Orthoptic exercises/vision therapy exercises but many aren’t so before spending a lot of money on vision therapy it would be a good idea to know exactly what his squint diagnosis is and the aims of the treatment. Surgery to straighten the eye does not force the brain to use the squinting eye unless there is binocular vision and it will depend on the type of squint and how old the child is when the squint develops so does not take away the need for patching. If his squint has been there from early infancy it may not be possible for binocular vision even if the eye is straightened. Sorry there is a lot of information there but I’m happy to come back and add more if needed

Thanks @TheOliveFinch that's really interesting. I don't have binocular vision. If I look through binoculars I see a circle with one eye and a crescent with the other but I can swap which eye is the circle. I use one as my main eye for distance and the other for near. And I can consciously switch. A young optician once said "oh god you're one of those awful people they sneak into our final exams!" But no-one ever explained what they did when I was 4 or why my eyes do this.

My late husband had a squint as a child. At first they gave him glasses with a patch; then he had an operation to correct the squint.

Your child's team hasn't suggested an operation?

Be aware that sometimes the eye moves out the way as the child gets older. It started to happen to my husband in his 50s. When he developed a cataract in his 'good' eye, an opthamologist insisted that the 'good' eye had to be covered and that he didn't need the cataract removed.

Thankfully, our optometrist persisted and the second specialist that we saw was more sensible: "He's in his 70s: he's not going to learn to use the other eye now."

He had the cataract removed.

Have they considered atropine? He might be happier to wear the specs if the good eye cannot see. (This has worked for a young Px I know).

My son has ptosis and was patched for a while. He's sensory and could only tolerate the fabric patch on comfy sunglasses - we would catch him trying to cheat out the side, but would correct him. He's almost 7 now and has just moved down to annual visits instead of 3 monthly - they expect it'll be cosmetic surgery only when he's old enough to have it under local while sitting up.

Thanks @TheOliveFinch they did mention the eye drops but said it will be difficult to tell whether it’s working as they don’t currently know how bad his vision is and whether it will blur the good eye enough. The last few appointments they haven’t been able to check his vision as he doesn’t really let them look at his eyes.
I remember at his last opticians appointment they said he was slightly long sighted but I haven’t got the prescription details.
I don’t know if this makes a difference but his eye turns both ways so not just inwards. His left eye does also turn occasionally but no where near as often. Current plan is to go back in 2-3 months and pick whether I want to try patches or the drops.

And no @WearyAuldWumman they won’t operate until he’s older they said. And that is only if I pursue it as they said it won’t make a difference to his sight. I’ve never been told that before today so I think that’s my main cause of confusion as I always thought that would help once all these other things didn’t work (glasses, eye patch)