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Nystagmus

4 replies

tiggy2610 · 08/04/2015 18:18

DS is 11 weeks old and 10 days ago DH and I noticed his eye would 'flicker' from side to side every so often. DS was born at 36 weeks via forceps an spent his first week in a phototherapy incubator due to jaundice. The movement isn't continuous and the frequency of the movement changes depending on time or day and DSs mood, sometimes it happens a few times every minute and sometimes he'll go half an hour without any 'wobbly eyes'.

So far there have been no signs of an vision or development problems with DS. He is a very happy, smiley little boy who is tracking objects and seems to be focussing fine. (He's currently sat in his bouncer fighting the monkey who hangs down in front of him!) We met with the GP at the start of the week who initially suggested nystagmus, however after spending 5 minutes examining DS she retracted this and said she really wasn't confident in giving us this initial diagnosis. We've been referred to the paediatric ophthalmologist for further testing but in the meantime we're in limbo….

When DS was 5 weeks old I was diagnosed as suffering from moderate postnatal anxiety and depression and I can count the number of hours sleep I've had since we spoke to the GP on one hand, which is ridiculous. Obviously, I've broken the number one rule and googled (I know…) and if it is congenital nystagmus I've read everything from "mild vision issues which can be greatly improved with glasses, little effect on every day life" to "Severe vision loss, difficulties in school, additional needs throughout life" Confused

I wondered if anyone had a child who had been diagnosed with nystagmus and could give me some real life advice? Or if there are any MNetters who have nystagmus themselves and could tell me a little more about it?

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tiggy2610 · 08/04/2015 18:21

Apologies, I should mention that the GP wasn't sure if it was just immature optic muscles due to his slight prematurity, however our health visitor said she had never heard of that!? Which is why we are back to a nystagmus diagnosis.

OP posts:
BlackSwan · 08/04/2015 20:49

Hi Tiggy are you on FB? If so there's a very good community called Little Four Eyes (it's a large US based group but members all over the world) and you'll find loads of members who have kids with nystagmus for one reason or other. A very good forum.
Our son has a nystagmus, but it's very mild. He has other stuff going on too - but there are a range of causes. In all honesty you should go see the paediatric ophthalmologist and see how things go with a proper examination. If you're going to have to wait months for a consultation on the NHS (I hope not) consider paying for a private appt just for some peace of mind.

tiggy2610 · 08/04/2015 23:01

Thanks for responding BlackSwan. I am indeed on facebook so will be looking for the group, I appreciate the tip!

I'm hoping it won't be too long for an appointment as the GP did say he would be treated as an urgent case due to his age (if that means anything now-a-days!) but we've already decide we'll pay for a private consultation if we need to.

Thank you again for pointing me in the direction of the group, maybe you'll see me on there.

OP posts:
Mylesmummy123 · 04/07/2024 05:48

Hi my 11 week old baby boy has suspected nystagmus and I just wondered what wax the prognosis with you son?

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