Hi Laura sorry for delay in replying. My daughter is 2 and half and it's 2 years ish since she was diagnosed. I've no intention of causing any upset /hurt in my note so forgive me if I do. I can be very honest I say I sobbed for a very long time when we found out and I think the stress that I've allowed myself to get into and thought I'd resolved has probably led to my recent Hiatus Hernia and stomach problems. In a round about way I'm trying to say please look after yourselves and enjoy your little one as much as possible because they will amaze you and will grow up much too fast.Things will get better.
All I can tell you about our little girl is that compared to her older sister she has been much later at hitting her milestsones but thankfully she has hit her milestones and it is only now that she is talking in little phrases that things feel infinately better.
You are doing the right thing using this network and I recommend the publications I got from NN, it answered a lot of Qns.
I would definately recommend getting 2nd opinions. I live in South East Wales and saw some people privately though they do NHS work too Pediatrician Dr Buss /Chepstow, Paediatric neurologist Phil Jardine Bristol, Prof Maggie Woodhouse at Cardiff School optometry. We go to a super VI unit GVIS and I've met other little ones with Nystagmus there( Gwent Visual Impairment Service tel 01633 645420 Sue Gray/ANn Tansley) they cover 5 counties Newport,Monmouthshire, Torfaen etc. I've basically been told by a Prof outside the catchment not to move from our area as GVIS is probably the best in the UK... all I can say is that I wish all services were as good as they are, hopefully they are. Don't give up, things will get better. As Ann Tansley (GVIS) told me "she's just a little girl that just happens to have Nystagmus" - how true. GVIS arranged for John Sanders to give us a talk on Nystagmus - that was so useful. I thought I was fairly bright with 3 degrees but honestly John puts me to shame he has accomplished so much he really is an inspiration. Keep positive things I'm sure will get better.
PS Totally aggree with Kathy, she put things so well in her earlier message