Nystagmus

Hi Sezza26, Just came across your post doing a google search.

My girl is nearly 16months, she was diagnosed with Nystagmus quite early too, just before 3 months I think. We've since got the diagnosis of ocular albinisim as the cause of the nystagmus. Although are yet to find the cause of the ocular albinisim!!

I'm keen to share info and experiences.

Hi, have they done the electro diagnostic testing at the greenlane eye clinic? (Assuming you're in auckland of course!) It was the results of that testing that confirmed ocular albinism for us.

When the nystagmus first appeared, her eye's moved very widely from side to side, but even within the first few months that improved, and now she can hold them still when looking at something up close, and they're just a bit wobbly - quick movements side to side but that don't go so far to either side; when looking at something at moderate distance. Although if she sort of 'zones off' her eyes just drift side to side slowly but wider across IYKWIM. Does your girl have horizontal nystagmus too?

Have you heard of BLENNZ?

http://blennzonlineforfamilies.edublogs.org/blennz-blind-and-low-vision-education-network-nz/

We got referred to them from our opthamologist as I was worried about what to do to help best develop her vision. I guess it might depend on where you live, but here in Auckland they came to the house to do an assessment. They can help right from birth if your daughter meets their criteria.
It was good to see how they check vision, and just talk and get ideas from them.

Not sure how much you know about Nystagmus. My understanding is that the movement makes things more blurry/less clear. And that the more the eyes are moving, the less well they can see.

Early on I found I didn't get any response from my daughter if I was too far away from her face, and she'd get upset if I left her alone on the floor in the lounge for example. As she's got older her vision has improved, and she can see well enough to make out my facial expressions from a good few metres away I think.

She's got some other medical problems, some not fully diagnosed so we've faced quite a few challenges. Including mildly delayed gross motor skills. I don't remember when she rolled over, but she was late to crawl and at nearly 16 months isn't quite standing by herself. But I don't think any of that is to do with the nystagms.

My girl is quite light sensitive. Again she seems to have improved as she's got older, but still won't look up at the sky (to look at a plane for example) unless it's really overcast or she's not facing the sun. When she was younger she calmed down and feed better in a dim room.

Haha that's turned into an essay! Ask away if you have more questions. I'd like to hear about what you've been through so far if you'll share. (Can PM or email if prefer)

Hi EleanorT,

It's nice to hear from someone else with a child with nystagmus.

Do my comments above sound similar to your boy when he was younger? I'm interested about him wearing sunglasses - when did you learn/realise he was getting headaches being outside?

How was he when he was learning to walk? apparently they can have trouble with depth perception, have you noticed that at all? I'm guessing that could mean troubles with steps and stairs?

I've got an adult friend with nystagmus and she now snowboards!

You say it started to affect him more when he was about 4&1/2; was there any change in the movement of his eyes - did they look worse/move more? Or was it just when he found and started using the null point/stable spot?

Have you dealt with Blennz previously? They might be able to provide assistance. Also have a look on the ministry of education website; there's info on there about additional resources - although hopefully his school will be aware of them too.