Apr 242011
 
The appointment for Jack’s VEP (Visual Evoked Potential) and ERG (Electro-retinogram) tests have come through for the 10th May.  They will help diagnose the underlying cause of the nsytagmus which may be;

1) retinal/sensory (eye related) e.g. congenital stationary night blindness, cone dysfunction, cone dystrophy
2) neurological/motor (brain related) e.g. albinism, ocular albinism, optic nerve hypoplasia, chiasm problems
3) idiopathic – no known cause

It will be good to know which type Jack has so that we have a better idea of how it will impact him as he grows up.

Over the past couple of weeks we’ve read the Nystagmus Network netletters and news items dating from 2004 to present.  They contain a wealth of information such as research updates, testimonials from people with nystagmus, and links to other useful websites and sources of support.  We’ve discovered so much including;

– The RNIB (Royal National Institute for the Blind) produce an Insight magazine and Insight e-newsletter
for parents and professionals working with children with visual impairment.
– There are radio stations dedicated to visually impaired users including ACB radio and Insight radio
– It’s possible to get a free Booktouch pack for children who are blind or partially sighted.
Royal Mail offer a service to send articles to the blind/visually impaired for free.
BT offer free Directory Enquiries calls to those unable to read the phone book.
– The Cinema Exhibitors Association offer a card entitling the holder to a free ticket for a person accompanying them to the cinema for those registered blind or in receipt of Disability Living Allowance.

  2 Responses to “VEP and ERG tests booked and more research…”

  1. Thank you for sharing your story. I also learned of our daughter’s Nystagmus at three months old, and have been struggling to get her seen my the appropriate specialists. She is now five months old and should be seeing a neurologist on Tuesday.

    I look forward to following your story. :)

  2. Thinking of you all today and hoping that the tests help you get a better idea of what is in store. Whatever comes of them, one amazing strength that Jack has on his side is his fantastic mum and dad who will help him to overcome and achieve his full potential. He is a very lucky little boy!

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