One week ago today our son was diagnosed with nystagmus (nys-tag-mus, “rapid involuntary movements of the eyes”, Oxford Dictionary) at Sunderland Eye Hospital. The previous afternoon our Health Visitor had come for Jack’s three month check and noticed almost straight away his eyes were moving from side to side and jumping when he tried to focus. She said she’d not seen it before and would like to refer him to a specialist to get him checked out. She said it could take a couple of months for an appointment, but as Jack is a lively lad and doing everything he should be at three months I never imagined it could be something serious or permanent. That evening we checked the internet to see what it could be and the only diagnosis we could find was nystagmus. We you-tubed videos of the condition and thought it couldn’t be that, could it?
Feeling anxious, the following morning I took Jack to the A&E at the eye hospital. He was seen immediately. The doctor put drops in his eyes to enlarge the pupils which took 20 minutes, and then because Jack is a baby, he had to pin his eyes open with metal fasteners to have a proper look inside (a nurse held his head whilst I held his body swaddled in a towel). He checked to see if there were any temporary causes for the eye movements such as cataracts but confirmed the eyeballs looked fine. He then told me our son had nystagmus. I asked if there was a chance it could be a virus (my brother had a scary one aged 10 that made his mouth wobble and dribble his food for a couple of weeks which went away as quickly as it had started) or something else temporary and he said possibly, but unlikely.
As nystagmus can be caused by a problem with the visual pathway from the eye to the brain, the next step is for Jack to have VEP (Visual Evoked Potential) and ERG (Electroretinogram) tests to determine which type he has and check whether there are any more serious underlying problems. I found some information about the tests here. We’re waiting for an appointment at the RVI (Royal Victoria Infirmary) hospital in Newcastle where they have specialist equipment and trained staff to test babies.
Needless to say this has been a shocking and incredibly sad discovery, and we’ve still a long way to go before we know the full picture. We have spent the week (in between Jack’s sleeps!) researching as much as we can and talking with family and friends. We’ve also found a lot of encouraging advice and support online, in particular on Ashley and Jen Bacon’s Nystagmus Blog and Jo’s The Shifty Eyes Blog. We’ve listed the sites we’ve found most useful in our Resources page.