Nystagmus? Or something else?

[VonScareBurton]

Really worried. I have noticed ds's (age 10) eyes have started to flicker from side to side - a bit like when you look out of a train window. Over the last week or so. Been to Dr, who ordered a load of tests to be done via urine and bloods, all been done just awaiting results.

He doesn't ever look like it's an absence/zoned out type of thing, it's really quick. Doesn't have any other symptoms except maybe slightly puffy eyes but not so you'd notice unless you saw him all the time. Eats and sleeps fine, school fine, happy with life generally. No medical history of anything more than the 'average' child - ie colds, coughs and a suffers mild allergies in the summer time/high pollen days.

Can't say I've noticed a time when it happens more than others - but like I said it's only been the last few days, it's never happened before. Of course like an idiot I also contacted 'Dr Google' - should have stayed waaaaay clear because now I'm scared stiff with some of the possibilities.... of course, it could just be a temporary tic, or something, but I'm not a glass half full type person, I wish I could be right now.

Anyone been through this?

Sorry, no. Did he have an eye test at an Opthamologist = Optician that puts drops in the eyes and then examines them under special equipment?

No eye test, which surprised me - in fact no mention of seeing an optician at all. I would have thought first port of call but I'm not a Dr! I'm going to take him for an eye test myself tomorrow morning anyway, there's nothing to lose!

Do most opticians have everyday access to the drops of which you speak? That sounds like the sort of thing I need to be doing whilst we wait for all his test results to come back.

Thanks for replying - I think I should have put this in Special Needs Children or Chat for more traffic tbh, but I appreciate you taking time to reply.

Optician for an ordinary eye test is a good option as they can refer directly to an opthalmologist (doctor with eye disease specialism) and have lots more training in eye issues than a GP would though they only see nystagmus once in a blue moon so pick one whos a) good and b) recently trained as they won't have seen it before but will hopefully remember their training.

My DS developed nystagmus unexpectedly and it was terrifying after making the mistake of googling. It turned out to be the result of two conditions, one completely benign but uncommon and one we alreayd knew about, interacting. It was non-sinister and stopped with treatment. DS had an MRI and some tests from the ophthalmologist and then was referred on to a more specialised ophthalmologist who knew what was going on straight away. He's fine and his sight is fine now.

What does your DS say it's like when it happens? How long are the episodes? What direction is it in? And does it go fast in one direction and slower in the other, or is it back-and-forth at the same speed?

MsNg - thanks for that, it's made me feel slightly more positive!

He says he knows when it's happening, it doesn't hurt or feel weird, he has no headaches or soreness around his eyes. It's happening noticeably maybe once/twice every few minutes. He opens his eyes widely - as though someone has told him something 'wow' is the best way to describe it, then his eyes flicker from left to right, together, at the same time. Occasionally it may be at a slightly slower speed and it's as though he's sitting next to me and trying to look at me without turning his head, iykwim?! No up/down rolling at all.

That's great news that your son's has stopped. It looks like the optician is the way forward then. Kids can be so mean and I'm dreading him coming home from school with 'x said this, y said that about my eyes' so to hear there are cases where it can be stopped is a fantastic reassurance.

How soon are you getting the blood test results from the GP? I would expect a referral to, probably, a neurologist sharpish as it is unusual. The optician isn't able to treat anything as they just deal with glasses prescriptions and basic checks - but they can refer on and are often better with eye issues than GPs as they only ever deal with eyes. The suggestion was mostly just in case - they should both refer on. An ophthalmologist is a doctor who specialises in eye conditions, so you might get referred in that direction, but I'd think a neurologist more likely as it's really the nervous system that controls eye movements in nystagmus rather than the eye itself, though there are links. I hope the kids at school don't do that to your DS :-( mine was too little for that to be an issue when it happened. I hope it goes well and they can fix it as easily as my DS's, let me know.

Hi VSB,

Most commonly nystagmus tends to be congenital so it is a bit odd that its just appeared now . If the nystagmus has just suddenly appeared then he would be quite symptomatic (Complaining of dizziness, sore eyes etc )

An optician would be a good port of call as you can generally get an appointment with them at short notice, and they can give the eyes a good once over. And at least put your mind at ease.

You can get end point nystagmus when you look to the extremes of your gaze. Alot of people get this and it is quite normal.

From what you've written i would tend to think it just a "tic", that he's developed and it will go away over time but def worth getting him checked by an optician..

Keep us posted....

Please make sure your DS is seen by an opthamologist and ask for a referral to see a Neurologist to rule out pressure elsewhere causing this.

Thanks everyone who's taken the time to reply, and ease my worry somewhat!

We are seeing an optician on Thursday after school. All bloods/urine results back, all clear except blood sugar 'slightly higher than normal but not worryingly so' They want to repeat that test so we're off to get that done on Friday.

If that's OK and optician finds nothing concerning then I think GP will refer us to a Neurologist. GP said we should get to see a neuro within 3 weeks or so (that seemed quite a long time?)

I'm hoping it's a tic/eye strain, obviously. Waiting games, these things though aren't they