Strange Eye Problem - any ideas?

[moosemama]

Before I start, I should explain that ds1 has Asperger Syndrome. I've already posted this in Special Needs, but no-one has any ideas there, so I wondered if there were any opticians or eye people over here who might be able to help.

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 a nearby university's 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 ds1 came into the conversation. 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 he can be seen quickly, as soon as the GP refers him. 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 'disconnected', yet 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.

Its made more difficult by the fact that he is highly verbal, but really struggles to verbalise anything relating to himself either physically or emotionally.

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? Or something more fundamental, like the way his brain is processing images?

I do know that he has a fairly significant visual processing delay and wonder if he's actually starting to notice that somehow. This evening he said to me that he feels like he sometimes sees something, but doesn't realise he's seen it, so it does sound like he might somehow be becoming aware of the delay - is that even possible?

We already know that he has trouble filtering out noise (as in auditory sensory problems) and he's now also telling me that because of this strange feeling in his eyes, he is struggling to take anything in when he reads (reading is one of his great passions) and that at school he can't take anything in at all, because the combination of classroom noise and sight problems are making it impossible.

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.

bump?

I'm just guessing here but is he trying to tell you he's getting migraines? These can cause visual disturbances. He could also have optic neuritis maybe?? It's very difficult to say though to be honest. I hope the appointment comes through quickly.

Thank you for answering belle.

He has suffered from migraines since he was about six, starting with abdominal migraines and leading up to migraine with aura, accompanied by vomiting and then followed by a long (as in 14-16 hour period of deep sleep).

That said, since going gluten free he hasn't had any attacks - that we know of.

The only thing is, he says he can see perfectly well, no mention of an aura, zig-zags, spots etc and I specifically asked him if his sight was blurred and he said no.

I hadn't considered it could be something to do with migraines, but with his history its a very interesting thought. Thank you.

'Disconnected' could mean so many different things, dizzy? or that they don't feel connected with his head? It could be migraine related but I'm really not an expert. It must be so hard for you both, I do hope he's feeling more like himself quickly.

I don't think he's dizzy, as he's usually able to tell me if he feels dizzy. He just doesn't seem able to tell me what he means by disconnected.

It sounds like it could be sensory, because it seems to be to do with how he's processing the visual input, but honestly, I suppose I'm a bit worried that it could be something neurological.

If it is sensory, it doesn't seem to make sense to me that its a new thing rather than a historical problem. He says he'd never had it before this winter.

Thank you so much for replying and for your kind thoughts, it seems this has got everyone stumped.

I get irritation to the optic nerves sometimes, makes my eyes feel very odd. Has he been unwell?

moosemama -my DS sees an orthoptist (and opthalmologist). In a nutshell, this is what they do... as described by the NHS site: "Orthoptists investigate, diagnose and treat defects of binocular vision and abnormalities of eye movement. "

They have far broader & different skills to an optician. I would definitely recommend you take your DS.

Belle, he had a high tem (hovering around 40) plus hacking cough for about 4/5 days at the beginning of half term and has been very pale and extraordinarily quiet and passive - for him, ever since.

Other than that, he also reported black and red poos to me this evening which is something else I'm trying not to panic about. Unfortunately, being nearly 9 he didn't actually show me the contents of the toilet, so I've told him if it happens again to call me. I've been frantically trying to think of something he could have eaten that might have changed the colour of his motions or if he's inadvertently eaten some gluten somewhere along the line, but I can't think of a thing.

BlackSwan, thank you. The problem is that they only go so far on the NHS (NHS don't usually cover things like Irlens Syndrome for example) and even ds2's consultant optician admitted that we will probably end up having to pay for ds1 to see a behavioural optometrist at some point, unless its something simple that the NHS lady can pick up with her more basic tests. Thing is, its certainly not sounding simple at the moment.

I don't know. It could be the after effects of the illness he's had, he needs checking over by a doctor really though.

That's a real shame - can you get him referred to an opthalmologist?

I think he'll be seen at least once for assessment by everyone at the eye clinic, so that's the orthoptists, optician and opthamologist.

I can just see their faces when I walk in with another child - ds2 has been going there on a regular basis for four years now.

Belle, I agree. These things always seem to come up at the weekend, mainly I think because he's so stressed by school during the week that its not until he comes down on a Friday night that he realises he feels odd.

He never realises he actually feels ill, even when he's throwing up he insists hes fine and he was still saying he was fine when his temp was 40 and he was coughing up half a lung every few minutes last week. Its a common problem with children that have AS, they often don't realise they're poorly and as a result ailments can get missed until they become really ill.

Has he been gf long? Coz my ds was badly tic-ing when we first went gf, but this settled after a while. Another possibility is the detox effect which can cause dryness in eyes and a need for more frequent blinking. It took prob about a year for my ds to get rid of all symptoms, this is what they say about getting worse before they get better when the toxic build up starts coming out, glad to hear he is better in some ways.
My ds still has some sluggish response in his eyes, but before he couldn't follow reading on the page, so big improvement overall. Hang in there :)

Hi nightcat. Can't believe I'm back here in child health with another confusing health issue - different child this time though.

He's been GF since the beginning of September 2010.

He's always been a really good reader though. We go to the library on a Saturday, he picks out 8 paperbacks and has read the lot by Wednesday mornining.

This is the second time he's gone gf. The first time he was gf for almost five months before he had to go back on it for the coeliac blood test and he's never had this before.

He spends half his life reading and uses it as a way of shutting out the world when he gets sensory overload, so this is really upsetting him. His teacher said he was snappy and short tempered at school yesterday and today and I'm pretty sure that's because he can't escape into a book when it all gets too much.

The tic-ing tends to come when he's anxious about something, so started in the summer holidays before he was gf and got worse as the start of school approached. It has lessened as his anxiety levels have fallen and is intermittent these days and a fairly good indicator of his state of mind. He's not vocally tic-ing at the moment, so I know he's not overly anxious about anything.

By the way, ds2 has been a lot better, so its still looking like the movicol was the culprit. That said, the dreaded constipation has reared its ugly head again - typically as soon as he went back to school after half term and didn't keep up his drinking levels. We're working on addressing it with diet and increased fluids rather than medication though and it does seem to be improving. So, fingers crossed.

It sounds as though he does have a latent squint or a convergency insufficiency, either could cause the symptoms he's getting. He's probably getting a combination of eyestrain and double vision.

I wouldn't worry at all, its fairly easily sorted out with either exercises or prisms in glasses. Its also fairly common.

Either an Optometrist or orthoptist is qualified to sort it out. An opthalmologist wouldn't usually get involved (wrong skill set) unless surgery was indicated which is v.v.unlikley.

Thank you for replying Karoleann. There's definitely a convergence issue but no-one's mentioned a squint as yet. He had an eye test at Boots Opticians in December - would/should they have picked up a squint do you think?

I have managed to get a little more out of him this evening. He had a nasty bump on the head while I was out and he was at home with dh, so I just wanted to checking his pupils really.

I got him to close his eyes and then open them and noticed straight away that his right pupil was dilating slower than the left. It did catch up and even out, but there was enough lag for me to be able to see it.

Called dh, asked him to get ds to close and then open his eyes then come in the other room and tell me what he noticed. He noticed the same thing.

So, then I covered ds's right eye with my hand and asked him to look at something in the room. I asked how his vision was and how his eye felt and he said fine.

Then I covered his left eye and straight away he told me that he could see hundreds of specks shooting around in his line of vision and it made everything look dull.

I asked him if he's seen it before and he said not until recently, but that its there all the time now and that's why he is scrunching up his eyes all the time, because the spots/dots are irritating him.

I assume they are some sort of floater that he's seeing and I know that everyone has those and they're usually nothing to worry about.

Then I got him to draw a picture of what it looks like for me and he drew hundreds of specks and explained that they are all zipping around and weaving in and out of each other.

So, now we have two things to tell the drs. 1, the unequal dilation and 2, the presence of what seems to be too many spots/dots to be simply floaters.

There is still the chance that its related to his ASD and that somehow he is focussing on debris floating around his eyes that the rest of us would probably not notice or would at least ignore. I'm not wholeheartedly convinced though, as that wouldn't explain the unequal pupil thing or the fact that there seems to be so many of the spots/dots.

hi moose, OMG, my ds had that delayed pupil dilation thing too, but we were told there is nothing that can be done. In fact I reckon it's something to do with the brain hemisphere (if I had to guess I would say about my ds it would be a result of poor neuro development in early years, possibly due to gluten or inflammation etc).
I never asked him what it was preventing him from reading, I wonder if changing the background colour (which is what some SN teachers have mentioned to us in the past) would make any difference?
I would be interested to hear if you find any advice on the dilation aspect.
My ds also scrunches his eyes from time to time, I just call it tic-ing (no verbal aspect to it), dr Natasha also talked about some bacteria/viruses that fed on gluten are still in the system, I would tend to agree although not investigated them in detail.

Hi

Took ds2 in to collect his new glasses today and 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 site of the hospital, all the time worrying and feeling guilty that I'd left it too long to get ds's eyes checked.

Ds spent pretty much the whole tome 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 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 and so had done a bit of reading and knew a little bit about it.

Apparently, sensory-ish, in that they can actually see tiny particles in the vitreous gel of the eye (a bit like floaters) and also in some cases the blood 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.

Nightcat I was in such a stress what with trying to stop ds going into meltdown and then getting lost twice, that I completely forgot to ask about the unequal dilation. They certainly didn't seem notice it, so I'm assuming his eyes weren't doing it today and now I'm worrying about whether it might have been caused by the bump on the head yesterday. Am kicking myself. That's what happens when its an impromptu appointment and I haven't been able to prepare and take a list of questions along with me. I will make sure to ask them when he attends the eye clinic at the local hospital though.

What a day! I'm wiped out now.

Anyway, I just wanted to come back to thank you all again for your support and let you know he's ok.