waiting to see

Hi there, it looks like our DS has a problem with his eyes. The GP phoned last night after consulting a specialist and they have said that it sounds like congenital nystagmus, he has referred us on the public system to see an opthamologist. After looking up the disorder on line last night we have decided not to wait and I have booked him into a private doctor.

Basically his eye flicks horizontally, a bit like you see in rem sleep, he doesn't turn towards sounds, he favours looking in one direction. He isn't really interested in any toys unless they make a sound. He does seem to recognise us and track us. He smiles and laughs and will do so without being touched or spoken to but for all we know we could just be two different blurry blobs to him. He still tends to go cross eyed, especially when concentrating on something.

I am really shocked at the lack of urgency shown by the doctors as after reading stuff on the nystagmus society in the US nd the UK it seems like it is something that needs to be taken really seriously and checked out asap (as in the same day not a couple of months). It can be an indicator of a neurological disorder, eye cancer and whole manner of other serious problems. Having said that he shows no other signs of a problem but the 12 weeks check isn't exactly all that thorough.
We took him at 10 weeks when the problem was first noticed and the GP wanted to hold off doing anything until the 12 week check, I really wish now that I had pushed for him to be referred asap, but at that time no one had even mentioned what it could possibly be and seemed to be down playing it so I thought that I was just be neurotic. Plus at 10 week visit he wasn't as alert as he was at the 12 week visit so I don't think the GP saw the true extent of it the first time.

I am really trying not too panic too much at the moment as he has not been diagnosed properly yet, but after reading nystagmus forums last night it seems like that is what is wrong. I have had a horrible feeling in the pit of my stomach since last night, I couldn't sleep and am finding it really hard to think of anything else. I couldn't get an appointment until the 19th, which isn't helping matters. It was gonna be the 10th October until I freaked out at the receptionist and managed to get an earlier appointment. Is so horrible, is not like I can ask him if he can see or what he can see. Basically worse case scenario is blindness or the disorder being caused by another disease or neurological problem. Best case scenario is that he will lead a normal life he will not notice the flicking and will only have slightly below average sight.

Am trying to prepare for the worst and hope for the best (much easier said than done)

Anyway I feel a bit better for writing this down.

Handmade Jewellery

Hoping for the best for your wee boy.

Hi, My son Micheal was born with the same thing. He is now 10 and yes it has effected his life and will do so for the rest of his life, but please stay calm. He is a normal 10 year old who has to do a few things differently. He can't play sport and will never drive, but he can smile and laugh and be extremely naughty and kick a big ball. He also attends mainstream school, he has a teachers aide and magnifiers and is currently qualifying for a laptop. My DH's cousin also suffers from this and she is a top ranking forensic scientist in Aussie so it can be done.

We were appalled about the lack of information chch public give on Nystagmus and also had to find out information ourselves. However they have been great with Micheals care and he has always been seen straight away for tests checks everything. So maybe reconsider. With littlies they tend to get them in as soon as possible.    Watch the boards as a lot of those people suffer from a lot of other conditions as well. There isn't a huge urgency for him to be seen straight away as if they though it wasn't just another one of those things that happens (we will never know what caused Micheals) they would have told you.

The good news with most Nystagmus is they don't get any worse on their own, so fingers crossed that is all he has (not that that isn't bad enough).

We have a fantastic set up here in CHCh and providing you are willing to fight you can get a lot of help for your child. Once you have seen the doc there is also a group called PVI Parents of vision impaired and they are a fantastic support.

I so vividly remember being where you are now so please don't hesitate to contact me via PM if there is anything you want to know or ask.

Edited by nuttymama

Hey, just thought I would let you all know that we saw the specialist yesterday and it is really good news. He put eye drops in to open his pupils right up and from that was able to then look into his eye and told us that he is neither long nor short sighted, there doesn't seem to be any focusing issues and both eyes look they are formed normally. He said the flicking is at the lower end of what he sees and that he would expect that over the next few months it would reduce greatly (or might be years). We are going back in Dec, if the flicking hasn't improved by then then he may be referred for an MRI and to see a peadiatric neurologist but he seemed to think that would be unlikely especially as all his development is coming along.

This is much better news for you - yay!

Just seen this thread - that's awesome news, cuppatea! I just want to say good on you for catching it so early!

My son, Josiah, has eye problems as well. He is extremely long sighted, and has mild nystagmus and a slight squint. He has scripted glasses, and they are helping his vision problems. Josiah has had his glasses for 10 months now, and will have them for the rest of his life. He's really good about wearing them, and knows they make a difference. I'm going to bump up an old thread for you about finding Josiah's eye problems, just so you can see you are not alone in this at all

Hope you get some answers soon.

Fantastic news cuppatea!!! It is nice to have that reassurance isnt it. Money well spent

I'm glad it has turned out ok, it all sounds like like such a scary ordeal.