Back in June, Jack and I went to our third Nystagmus Network Open day. This year it was in Leicester, and there was a great line up of sessions including a speech by Sarah Caffrey, a paralympian with nystagmus and achromatopsia.
Jack was recently issued glasses by the Optician at Sunderland Eye Hospital.
We have recently had some great news about new baby Fletcher and Isaac …
In the Back to Bounce post on 13th May last year I said I met a lady who works in the Sunderland Children’s Sensory team for Visual Impairment, and she offered to do an assessment of Jack at our home after meeting at the Bounce session.
Jack had his fourth appointment at Sunderland Eye Hospital in April. He saw three Doctors.
Last week Jack, Isaac and I (Mum) attended our third Leicester hospital appointment to take part in the OCT Hand Held Scanner Trial, have tests for genetics research, and find out whether Isaac has nystagmus or not (based on results from the last appointment).
Jack had his third appointment at Sunderland Eye Hospital this week. The purpose was to check his eyes and sight are developing as they should, and check whether he needs glasses.
In To operate or not to operate 2? I posted;
“As it would be difficult for us to travel to the US to see Dr Hertle, we’ve asked Jack’s doctor if they think he falls into the “good foveation periods” category (to rule out the possibility his eyes may not develop to their full potential if he doesn’t have an operation before age two). We’ll write a follow up post when we know more”
Earlier this month Dad and I travelled to Leicester for eye appointments for Jack and Isaac spread over two days. The primary purpose was to take part in the OCT hand held scanner trial, but it was also to;
– Carry out VEP (visual evoked potential) and ERG (electro-retinogram) tests
– Carry out a visual acuity test to check whether Jack needs glasses
– Check whether Jack has Ocular Albinism
– Find out more about the chances of us/our children passing on nystagmus genes
– Check whether Isaac has nystagmus
We’ve read several posts by parents saying they’ve been advised the optimum age for performing surgery to correct nystagmus is before age two (primarily on the American Nystagmus Network e-mail discussion list and Facebook page). As Jack is 18 months there is only a six month window of opportunity for him, so we’ve sought advice from experts to check we are doing the best we can for his eyesight.