Apr 072011

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.

  4 Responses to “The First Week…”

  1. Hi my name is Katie Brown, i am a mum of 3 girls aged 6yrs 4yrs & 16 months.
    Seeing ur website this morning feels a bit like a eureka moment! Someone else who knows how i feel! Your story is identical to ours.
    My youngest daughter was diagnosed with Congenital Idiopathic Nystagmus at 6 weeks old. We are under a consultant at our local hospital and have regular 6 monthly check ups and the same test have been done as with ur son. She is also registered with a Visual Impairment Teacher who has seen her once only on a home visit for 20 mins.
    I am posting on here to get help and advice from sufferers carers or health professionals in order to help my daughter better.
    I feel very in limbo at the moment as i fully understand what Nystagmus is but dont dont know what or how my daughter sees and no one can say or even hazard a guess we wont be able to say exactly until she can tell us. As much as i believe this i feel i could be doing more to help her and i feel her emotional well being is affected by her condition too but isnt addressed.
    My consultant is i feel very laid back and it feels like hes sayin yeah shes got Nystagmus but ive seen worse shell be fine! And my VIT said were here to help if you need anything and promised to invite us to groups with others sufferes and to put us in touch with other families but ive heard nothing! If these are the people here to help i feel very let down and thats why im on here to get in touch with others involved in any way with Nystagmus. NN have been fantastic and invaluble for information if anyone feels they can offer advice that would be fantastic
    Thanks Katie x

    • Hi Katie,

      Being in touch with other Mum’s has helped me so much, and I’ve learnt a lot about how I can help Jack in future. I agree about feeling in limbo as it’s very difficult not knowing the extent of what Jack will and won’t be able to see until he’s around age three. I have also come across the “he’ll be fine” attitude several times. I think generally people are trying to help and be positive but sometimes it has come across uncaring and patronising, especially after Jack was first diagnosed.

      Regarding putting you in touch with other families and professionals I can recommend two very good organisations which I found on the Nystagmus Network Links page.

      1) Look – an umbrella company for visually impaired children. As soon as I joined I was sent useful information about Nystagmus and local charities – including the Bounce group I now attend. The lady who wrote said I could contact her personally about her experiences with a visually impaired child any time, and/or she could put me in touch with a local family. I receive regular newsletters, and there are lots of activities organised for when Jack gets a bit older.

      2) Contact a family – an organisation providing advice, information and support for parents of all disabled children. They can also put you in touch with other families. I e-mailed our regional contact and now receive a regular newsletter with all the local events/groups we can attend.

      Regarding feeling you could be doing more to help your daughter and her emotional well being I think so long as you are loving her, seeking out advice, and doing what comes naturally then you are doing the best you can.

      I’m not sure how many people will see your post on this website but I hope you are able to get answers to all your questions.

      Good luck. I’d love to know how you get on. xxx

  2. Hi Claire
    Thank you for your reply i have contacted both organisations above already .
    Contact a family hasnt anyone in my area as yet but i keep logging on to check.
    I have posted a membership form off to LOOK a while ago now but not heard anything back as yet think maybe i need to chase it up.
    We are off for our usual check up today at hospital and i think they want her to have a glasses test!
    Will keep you posted.
    Katie x

    • Hi Katie, good to hear from you. I hope you get sorted soon (definitely worth chasing up Look). Best of luck at the hospital. I look forward to hearing how it goes. xxx

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