Odd eye problem - sensory or something else?

[moosemama]

We are in the process of getting ds1's visual motor issues assessed, having had his vision checked by a standard optician and finding out that he has excellent 'vision' but very poor convergence and motor control.

We were just about to book him in at Aston University's Vision Science department, (where they can do a lot more thorough checks and assess for Irlens among other things) when I spoke to ds2's consultant optician at the hospital's eye clinic yesterday and just happened to mention ds1. She told me they have an orthoptist (or was it opthamologist?) that is trained to check out motor/behavioural opti stuff and she has taken his name and details so that we can be seen quickly as soon as the GP refers. The advantage of this is that, obviously these checks can be done on the NHS for free and they are then able to refer on to the most appropriate people for further more in-depth testing if necessary. Its still possible that we will have to pay somewhere along the line, but probably worth trying the NHS route in the first instance.

In the meantime, he seems to be struggling with his eyes. Not his sight, he says he can see fine. He has a sort of tic where he scrunches up his eyes anyway and just recently he seems to be doing it a lot more and at the same time looking as if its really bothering him. Normally he just does the scrunching without even realising he's doing it, so this is definitely different.

He says his eyes don't feel itchy or sore - they feel like they are detached, but he can still see.

That's all I can get out of him about it. He says its really hard to explain how they feel, they don't hurt or feel poorly, but he thinks its getting worse and the only way he can describe the feeling is that his eyes feel disconnected, but he can still see.

So, I'm really confused and don't know what to think. Last time he said this (before christmas) I took him to the GP to get his eyes checked, as I thought he must have an infection and I know he's hopeless at recognising when he's ill. The GP checked his eyes and said they were all clear.

Could it be sensory do you think? Or something more fundamental, like the way his brain is processing images?

I do know that he has a fairly significant visual processing delay (based on his WISC IV results) and wonder if he's actually starting to notice that somehow.

Does anyone have any experience of something similar to this, or have any ideas as to what it might be and how we can help him?

Obviously we will now be pushing to get him seen asap, but even if the appointment's rushed through its going to be at least a couple of weeks and he seems to be really struggling.

How old is your DS1?

He'll be nine next month. Why?

Sorry, had a thought that is probably completely irrelevant as your DS is older and didn't want to sound alarmist.

Now you've got me intrigued. What did you think it could be - I won't panic - I promise.

I was thinking out loud really. Tourettes. But it normally starts between 5 and 7 years old. It can be co-morbid with ADHD and/or OCD. My DNephew age 7 had a grunt and an eye twitch recently, and my sister was very concerned, but the correct glasses have eliminated the tic so hopefully over anxious. So, sorry, it does sound alarming, but as I said probably irelevant.

It sounds a bit like a tic to me my dd had an eye scrunching tic for a while. She has a nose scratching one now! She has ADHD but we have never bothered getting tics looked into as they don't seem a major issue and she has bigger fish to fry x

Exactly, and Tourettes can often be so mild it's not diagnosed at all.

Thanks, not alarmist at all, I can totally see where you are coming from and have actually considered the possibility of Tourettes in the past.

He only developed the tics in year 3 (so coming up for 8 years old) when he was going through hell with school and bullying and they tend to be at their worst when he's ill, stressed or upset about something. He scrunches up his eyes, has a whole face scrunch and some low level vocal tics, including a really quiet hum and the dreaded throat clearing.

I asked about them at his assessment and they said they think they are a combination of fairly typical AS stress release/sensory tic-ing, rather than Tourettes.

So weird, this thing with him saying he feels like his eyes are detached though. One of those times when you really wish you could enter his world for a while to get a better understanding of things as he perceives them.

Can't make up my mind whether it could be something very matter of fact perhaps health wise, that he just can't communicate or whether its something sensory or neurological.

Thanks for your reply Chundle.

Its not really the tics that I'm worried about to be honest. We've pretty much got used to them over the past year or so (well all except for the throat clearing - that drives me to distraction ).

Its the fact that his eyes are obviously bothering him and the whole 'detached' thing.

Sorry, being over-sensitive. Used to parents of NT children (like my sister) who would be horrified at mention of any DX suggestion, and Tourettes has a bad reputation in the media.

I hadn't realised the scrunching wasn't new also. I really can't get in the mind of my DS2 at all, so sympathise. Always have to guess if he's ill, he's like a toddler, who doesn't recognise he's poorly.

Don't blush its fine. Its so unusual to be somewhere where everyone 'gets it' and we spend half our lives treading on eggshells, so it tends to become our default setting after a while.

Ds is a nightmare when he's ill. He had a bug over half term, temp of 40, feverish and green with a hacking cough - but he was still saying "I'm not ill, I'm fine".

Even when he gets a vomiting virus and is throwing up continuously he insists, "I'm not ill, its just travel sickness" - er, travel sickness - in his bed! That's because, once, when he was about three, he did actually get travel sickness on a long journey. I think it was the first time he'd ever been sick, so obviously every time he's been sick ever since, he must have travel sickness!

Seems like everyone else is a stumped as me on this one. So frustrating as he is so highly verbal and generally very articulate, yet finds it so hard to explain anything that has or is happening to himself in terms we can understand.

We get a lot of "I'm fine." So much so that one holiday chest infection the doctors had him on a nebuliser, strong antibiotics, steroids and an inhaler! We'd been 'paddling' up to his chest in the the cold, cold Cornish Atlantic the previous day. What a bad parent.

me too!

On our one and only night away without the dcs last year, ds1 came down with a stomach bug and started throwing up everywhere.

Being ds, he had my poor sister convinced that he was fine and should be allowed to eat pizza with the other children. That was obviously a very bad move.

He stood on the stairs, about to throw up and refused to move, so dsis, being only 5ft herself had to carry him downstairs to the toilet. Unfortunately for her, he has hypotonia and is a dead weight when you pick him up as he doesn't hold on or 'help' in any way. Poor woman had a bad back for weeks afterwards.

Needless to say, we got a frantic phonecall for us to come home and rescue her, she handed the reins over to my Mum and went home before we got back!

She has two grown up children and a ten year old ds of her own, but a poorly ds1 was too much for her.

We are going to the same festival on the same weekend this year ..... this time Mum is having both boys at her house!

Ooh, a festival! I'm jealous, that's so rock and roll.

Nah! More sad old hippies than rock and roll. We're too old for it really, but sadly clinging onto our long lost youth.

We took dd last year when she was 16 months old and she's coming again this year as all three are a bit much for Mum for a whole weekend.

Its not a big festival, just a small family friendly one with lots of bands from the old 90s festy scene. Would be nice to actually be able to stay and see some of the best bands this year though.

We toyed with the idea of taking the boys this year, as it really is very family friendly, but ds1 just wouldn't cope - not least of all because our VW camper doesn't have a cigar lighter socket to charge his beloved Nintendo DSi!

He does love going to Grandma's house for a good spoil though, so on balance its better not to take him and that way we all have a nice weekend.

Ok, so things have stepped up a bit. Ds has had a rough day at school and has told me that he can't read properly or take anything in because his eyes feel so detached and noise makes it worse.

Surely this must be sensory?

The only thing is, he also said he feels like he sees something, but doesn't realise he's seeing it at first - which to me sounds like he's actually noticing his visual processing delay - is that even possible? again

His teacher came to see me in the playground after school today and said he'd been highly irritable and snappy all day and I can't help thinking the two things are connected.

Its all very strange. Ds is a prolific reader, the youngest child ever to become a free reader in his school and they couldn't test his actual reading level, as he was already up to age 13 and as he's in primary, they didn't have the appropriate tests available. I can't get my head around how he can love reading so much, if he's got such awful problems with his eyes.

Sorry Moose, it sounds really strange, but I've got no ideas. Back to the docs?

Seems that way. We need to see the GP next week anyway to get the referral to the behavioural orthoptist at the paed eye clinic. I think I may have to put pressure on for an emergency appointment if things don't improve over the weekend.

I really am so puzzled by all this.

I wonder if its worth posting in children's health?

Just thought I'd pop in to update you and thank you again for your support. (I have updated the thread in child health as well.)

So, today we took ds2 in to collect his new glasses today and while we were there I asked their advice about ds1. Only to be told by the optician to take him straight up to the emergency eye unit at the city hospital (about an hour's drive away)!

We had only popped into town for half an hour and had to try and find something for us all to eat before we left, as it was already 2.00 and no-one had had any lunch. Typically, the only thing Holland & Barratt had that was gf was one packet of biscuits and the good health shop is shut on Sundays, so they ended up with mini packs of fruit and salt n shake crisps plus a milkshake each from Boots - plus said biscuits.

Got lost twice on the way to the hospital, ended up at the general A&E dept the first time and had to be redirected to a different part of the hospital - which involved getting all the dcs strapped back into their seats and driving to a different site. Of course the whole time I was feeling awful - worrying and feeling guilty that I'd left it too long to get ds's eyes checked.

Ds spent pretty much the whole time on the verge of a meltdown, not coping at all well with the whole spontaneous nature of the hospital visit and being extremely distressed at not being able to read or go on his ds.

Anyhoo, eventually we did see a lovely doctor, who was really good with him. Ds had the dilating drops put in, we waited while they took effect (had to think of a lot of word games like 'I went to the shops and bought' to keep both dses occupied and prevent a meltdown) and then he had a thorough check of the structure of his eyes done.

Dr said his eyes are very healthy, no sign of any problems at all, but that he has come across this before in autistic children, so had done a bit of reading and knew a little bit about it.

Apparently, its sensory-ish, in that some children who have ASD can actually see tiny particles in the vitreous gel of the eye (a bit like floaters) and also in some cases the cells flowing through the veins at the back of the eye. Whereas you or I might see one or two floaters, they will see a lot more and often much tinier specks.

He did say that, in his experience, this tends to be at its worst when they are having other sensory problems and he did feel the visual motor and convergence problem might be exacerbating it - so we need to get that sorted asap.

So there we have it, a huge relief after a very stressful day.

I am totally knackered now and definitely in need of .

God, moose, what a day! Thank goodness it had a happy ending. All our chat last week seems a bit trivial, now. Well done all of you for for getting through all that trauma. Have and chocolate.

Thanks Ellen.

Sometimes its the chat that gets you through though isn't it. That's what I love about the SN boards, you can get advice, support and distraction all at the same time and each on is equally as important as the other.

Am very grateful for the and chocolate also!

Wow! Imagine actually finding a doctor who knew something!

Glad it's nothing worse. Hope it gets better soon.

Indigo - I know! I was actually rendered speechless - well for a few seconds!

I only mentioned the sensory thing once he'd said ds's eyes were ok and thought he'd just give me 'that look' - you know the one, but he didn't - he totally got it.

As it was eye a&e on a Sunday evening I couldn't believe it - as my Mum would say, someone was definitely watching over us!

Ds actually said his eyes were a bit better after he'd had the dilating drops in them and hasn't mentioned them this morning. Can't help thinking its here for the long haul though, unless we can find a way of either helping him ignore it or deal with whatever it is that's making him hyper-sensitive.

Poor kid, I had just a couple of small floaters myself yesterday and they really got on my nerves - he's seeing literally hundreds of them zipping around all the time.

Vision is just such a weird thing.

People who have nystagmus (wobbly eyes) all their lives pretty much get used to it and don't really notice it (depending on the severity...)

DSs vision (well visual perception) is apparently awful but he doesn't complain. (Including intermittently loosing his vision, only being able to read the board if he's directly in front of it, no 3d vision,....)

I have been following your thread with interest.
Wish I had some ideas...

Maybe 'cleaning' eye drops would help? Maybe he'll get used to it? Maybe tinted lenses would help? Absolutely no idea at all....

My favourite place in the whole world (Sound Learning Centre) do Lightwave Stimulation but I'm not sure if it would help with this or not.... (Obviously, it probably won't help. Probably nothing will help - but I never give up clutching at straws )

I'm at a loss really, as eyes are such an enigma to the layperson, yet such a vital sense. Its so frustrating as usually I can come up with something to help him, but with this I am out of my depth.

Like your ds, we didn't find out ds2 had sight issues until he developed an infected chalazion just as he started Nursery. We went to the eye hospital to get that sorted and they discovered he could barely see with his left eye! He'd never shown any indication, as it was just normal for him. He's been back and forth to the eye clinic pretty much constantly over the past four years and bless him he was trying so hard to reassure ds1 when he had the dilation drops put in.

We're taking him to the GP this week to get a referral to the local hospital's paed eye clinic. I was chatting with ds2's optician there last week and she mentioned that one of their orthoptists has had special training in behavioural and visual-motor stuff, so they would be happy to see him in the first instance and then advise us where best to take him if he needs more help than they can offer. Got to be worth a try in the first instance, especially as its free.

Am hoping they'll see him as an emergency as his eye problems are now severely affecting his ability to work at school.

I do wonder if tinted lenses might help, as its definitely worse in bright light, so it seems logical that white/bright backgrounds for text would make it worse.

Depth perception is another problem for him and was picked up at his OT assessment. Is that something to do with convergence/binocular vision? The optician that tested his eyes at the end of last year said his convergence was the worst she'd ever seen in a child.

He is seated right in front of the board at school and can read the normal electronic whiteboard at school, but says the words break up on the white dry-wipe board.