Experiences of nystagmus please

[alana39]

Posted in child health on this a while back but only had 1 reply and on a search saw nystagmus was mentioned more in the SN section so hoping someone here might know more.

DS3 is now 6 weeks old and his eyes started shaking (horizontally) at about 3 weeks. I've taken him to the GP who has referred him to hospital paediatrics and said it was nystagmus - I've seen this before in adults with neurological conditions but don't know anything about it in infants and neither did the GP (who is very good so guessing it's fairly uncommon).

Anyway I suppose I'm just curious to hear from anyone who has a child with nystagmus as I've read it is often associated with visual impairment, and although we haven't got a diagnosis yet I would like to know more so that I can ask informed questions when we do get an appointment. Also if there is possible visual impairment are there things you can do to stimulate vision in a very young baby as presumably it can't hurt to get started with simple activities just in case.

I haven't noticed anything else that suggests a problem (but he is only 6 weeks!) and obviously I'm worried about this but not a panicker by nature and would appreciate any information you can give me - don't worry about giving me possible bad news please.

TIA

I'm 20 and have had it all my life. I am also registered as visually impaired, with lots of other little conditions. Below is what I've put on all my college/university applications:

I suffer from a range of visual problems, including optic atrophy, left hemanopia (loss of visual field on left side), Nystagmus (involuntary jerky movement of eyes), hypermetropia (Long sighted), Restricted distance vision, but good near vision.

I currently do a film production course at uni, so even though I'm not allowed to drive (yes, it's that bad!) I'm still doing everything I want to do. You may find there is something else that will get diagnosed, but really, as long as you support your DS in whatever comes his way, he's gonna be fine

The worst times for my nystagmus is when I'm tired, but also when I'm stressed out, it can set it off. I don't notice it myself, but others do.

My son has bi-lateral nystagmus which was noticed at six months old. It got worse for a while, but seems to have improved now. It certainly doesn't affect his sight.

My DS has nystagmus and cortical visual impairment and is registered blind.
He can see, his eyes work just fine - it's the missing chunks of his brain that caused his impairment.

As I understand it, nystagmus is related to the muscles controlling the eye, and not the function of the eye itself, so there may be no visual impairment.

DS also does the tracking that Riven did with her DD and, lots of black and white books, playmat, pictures etc.
Lots of noisy toys to try to teach him to look at the sound.

He is 18 months old now and his nystagmus has improved dramatically from those early weeks. We rarely see the eyes quiver now, as others have said, mostly when tired/unwell etc.

Thanks very much everyone, will just have to be patient now i suppose and wait and see.

Do you have a children's eye clinic locally? We have one called Ceepok, and they see the child and do exercises etc. They see them every 6 months and give them new exercises. My DS2 doesn't have nystagmus, he had a problem processing images, but I do know that Ceepok deal with nystagmus as well.

another thing that is useful to know about nystagmus is that your ds might find that there is a position which he finds most comfortable for looking at things, called the "null point" where the effects of the nystagmus are minimised, and that this is absolutely normal and not to be discouraged. so if ds looks at things from an unusual angle, don't worry, it is probably just because this is the most comfortable angle for him.

My dd1 has nystagmus, as a result of brain injury as a brain (Brain haemorrhage as a premmie). She also had a squint, which was corrected by an op, not for cosmetic reasons, but because she also has a visual field deficit, and we were told the op would help her general vision.

She is registered as being visually impaired, and attends a school for children with VI, and other disabilities. (Tis a fab school) She is now 8.

Best wishes