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(13 Posts)
99percentchocolate Fri 17-Feb-17 20:13:19

Does anybody have a child with Nystagmus? My DS (9m) has been diagnosed this week and we are waiting for the hospital referral. I'm worried about what the future holds for him, how much support he will need in school, etc and was wondering if anybody had any experience they could share please?

OP’s posts: |
WinterCookies10 Fri 17-Feb-17 22:29:49

I have no experience but bumping for you

99percentchocolate Sat 18-Feb-17 15:20:31

Thank you Winter flowers

OP’s posts: |
SasBel Sat 18-Feb-17 15:24:21

No experience but bumping for you. Is that 'dancing eyes' ?

Atticmatic Sat 18-Feb-17 15:25:19

Oh I do! I have two boys with it and various other problems but I know a bit about nystagmus. Ask away! smile

Rainatnight Sat 18-Feb-17 15:28:22

No direct experience but a friend's daughter has it. The main thing I've learned is that Ts quite a wide spectrum. My friend had the same worries as you but as time has gone on, her little girl's eyes have got better. She wears glasses, can see ok, and there's barely any visible 'wobble'.

Whereabouts are you? The specialists will give you lots of information and advice.

99percentchocolate Sat 18-Feb-17 17:17:17

Thanks for the replies all. We are in the Midlands. He was only diagnosed by chance when I took him to the GP for conjunctivitis. The GP spotted it straight away and then called in another dr who confirmed it too. Waiting on the hospital appointment now to confirm that it's congenital and not due to anything nasty and to find out how well he can see.
I'm quite concerned about when he starts school - will they make many adjustments for him? Are teachers generally ok about it? Does this mean that he will be classed as having SEN when he starts? Will he learn to read ok?
Apologies for writing so clumsily - I'm quite shellshocked.

OP’s posts: |
Atticmatic Sat 18-Feb-17 17:51:55

I'm surprised it wasn't picked up earlier to be honest. Anyway, sorry, this reply will probably be hideously long. My non-id twin boys have nystagmus detected at 7 weeks old by the health visitor. They went on to have developmental delay and also have other problems.

After various tests, they still only THINK it's due to a condition called ocular albinism. I want to stress their developmental delay and learning difficulties have nothing to do with the nystagmus - it's a totally separate thing. I'm sure you'd know by now if your DS wasn't meeting the usual milestones and I hope all is well for you.

Anyhow, because of their related problems, my boys have always been in a SEN school but I think I can help with some of your questions. Whether the school class your DS as having SEN will depend on the level of eyesight he has and if any adaptations have to be made. They will make adjustments for him (or they absolutely should) if they are recommended by a specialist/the Visual Impairment Team/Opthamologist/Senco.

The diagnostic journey can be quite long. First they took a developmental history of myself and (now) ex-h, then tried a few tests at the Eye Hospital but really, the 'good' tests couldn't be done for a good few years until the boys could co-operate. Some of them involved watching a series of patterns in a dark room with electrodes stuck to their heads so a wriggly toddler doesn't want to do that!

Learning to read should be ok as books have such a large print for young ones, it's not a problem. In later years, when fonts are smaller, magnifiers are very useful and sometimes a reading and writing slope. Computer fonts are easily made bigger and screen work enlarged. Having to sit near the front of the class is generally a must but again, depends on the vision he has. Sharing books can be difficult with nystagmus as many children have a 'null' point - a way of tilting their head or looking at an item in a certain way which will minimise the wobble and help them to focus.

My boys prefer to just hold things very very close. They both sit in front of the TV, directly in front of it! This isn't harmful and I was told not to discourage it.

Some people with nystagmus have quite good vision, some don't. My boys are registered as partially sighted as they need things to be 6 x bigger than someone with 'normal' sight before they can see it clearly. They manage ok. They are clumsy though. They find sports difficult (a thrown ball is hard for them to track for example). They won't be able to drive.

But, many people with nystagmus aren't classed as partially sighted and just need a little help - bigger fonts now and then, etc.

I hope I've not worried you. People rarely seem to notice my boys have an eyesight problem. If you're on Facebook, look up Nystagmus Network - a really friendly group with loads of knowledge.

Take care.

Atticmatic Sat 18-Feb-17 17:52:18

blush at the length of that. So sorry!

Seahorse1978 Sun 19-Feb-17 20:34:02

op I'm in a similar situation to you and am interested in replies here from other mums further down the line - I was at my opticians yesterday to pick up some glasses for myself and the guy took one look at my 10month old son and said he has nystagmus. Feel very upset about it, for him, and can't stop looking at his eyes now. My boy seems to see ok, he is crawling and exploring a lot and loves to look at books and pictures, but his eyes do dart constantly in very small movements side to side, I just hadn't really noticed or understood it to be different. I will be taking him to the gp this week to get a referral to the hosp. Let me know how you go and I'll do the same.

1busybee Tue 21-Feb-17 11:11:23

I myself have nystagmus and astigmatism ,diagnosed very young, due to the fact I was cross eyed!! I was under moor fields eye hospital for about 12 years and had my cross eyes corrected by surgery at a few months old. It's tricky to say as I was at school many years ago in the 80s, 90s and font remember having any special provisions but I did struggle with coordination and was quite clumsy. My dad spent hours in the garden doing bat and ball games etc to help this. I think my nystagmus is mild, apparently everyone has a null point where the wobble is most noticeable. Obviously it is hard to say as I know nothing different but I have grown up in mainstream education, got GCSEs a levels degrees and am married with three children and a profession so for me things have been fine. My eyes do tire quickly and when I am tired I notice things are far more difficult to focus on, I struggle for example to see fast moving birds in trees etc but everyday life is really not a problem. I hope that helps. Feel free to ask anymore but like I say I really didn't have any intervention etc.

Seahorse1978 Wed 22-Feb-17 08:18:30

Thx busy bee, it's really helpful to know your experience, and yours atticmatic. We've been referred to moorfields now so looking forward to getting assessed and specific advice. I don't think there's much that prepares you for being told things of things like this for your child. My optician was delighted with himself that he spotted it and didn't realise it might really upset me. I am grateful to him of course. thx for replies.

Rainatnight Wed 22-Feb-17 12:56:43

It's great news that you'll be under Moorfields. That's where my friend's daughter goes. Their children's department is great, your LO will get the best possible care. Good luck.

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