10 weeks old possible nystagmus?

[123naomib]

Hi all
Has anyone had any experience of their babies being diagnosed with nystagmus or something similar? My baby is 10+4 and about 5 days ago I noticed her eyes shiver very slightly when she was feeding. Since then I've noticed it a few times, seems to be worse when she's tired but other than that there's no pattern and it doesn't seem to happen often. HV seemed unconcerned so I made a GP appointment and she didn't say much, just that she was going to refer us to the pediatrician for a check over.
Does anyone have any similar experiences? How are your babies coping? Was it nystagmus? Somethibg more or less serious? I have a million questions but feel like all I can do is wait!

My DD has nystagmus. It was noticed at a v similar age. It was a little scary when first spotted at GP. We were there about something else and GP said I'm just going to make a few calls and I'll contact you this afternoon. She then phoned me later and advised us to take DD to A&E for immediate check up. Anyway that was the worst part. Since then DD has been getting 6 monthly check ups with specialist but the nystagmus has reduced as she's got older and to-date she hasn't needed glasses although they will keep monitoring and it might be a possibility in future. I know it's really hard but try not to worry! We found the whole process of medical appointments a bit daunting but they are super careful with young babies. And with nystagmus it generally improves as a child gets older so whatever you see now, it shouldn't get worse. You may find it's nothing at all and if it is nystagmus the medical profession will keep monitoring it closely. Our DD is 2.5 now. She sees well and her nystagmus is hardly even noticeable anymore but is worse when she's tired or in a new environment. Good luck! I know it's a worrying time when your baby is so young.

Thanks for your reply. I have noticed today that it is much worse when she's tired, but I feel like she can see well. She follows objects and toys and is interested in pictures and our faces, the TV etc. She's also starting to try and bat objects in front of her.
I feel like I want the GP to speed up the process a bit, I'm worrying myself sick, I Googled it (bad idea I know) and saw things about brain tumours etc. I really just want her seen by the paediatrician ASAP 🙁
I am really glad to hear how well your LO is doing, that makes me feel better!

From what you're describing it sounds similar to our DD. We weren't concerned about her eyesight but the waiting and unknown is the difficult bit. Yes, google is full of worst case scenarios. I think the brain tumour thing was why our GP referred us to A&E but my instinct told me it wasn't that bad. I'm sure from what you're saying your LO will be absolutely fine. If you look up nystagmusnetwork.org there's useful information on there that might help you find some of the positives. E.g. The condition is as common as 1 in 1,000 in the UK. Hope your appointment comes soon. I know how worrying a time it is. DM me if you'd like to keep in contact!