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Congenital Nystagmus!?!?!?


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  #1  
September 6th, 2007, 01:07 AM
Regular
Join Date: Sep 2007
Posts: 1
Hi,

Our son possibly has congenital nystagmus, his eyes flick horizontally usually with the quick movement to the right but have also noticed it to the left. It was first noticed at 10 weeks we took him to our local practitioner who didn't think it was a problem at 10 weeks as apparently all new borns do it, and wanted to wait till his 12 week check up. We have just had this and this time he was more awake and the doctor saw the severity of it and phoned a specialist straight away. They have said over the phone that it sounds like congenital nystagmus, we have been referred to opthamology on the public system (we are in New Zealand) and it may take a month or two for him to be seen. Have been having a look around the net and we are now freaking out. Family doctor did not seem to think it was a big deal and that waiting a month or two wouldn't be a problem. Am going to phone a private hospital tomorrow to find out how much it will be to get him seen straight away, is this over reacting?

We do not think he is blind as he tracks us and smiles and laughs, he does tend to always have his head turned to the right, he was breach and we had been taking him to a chiropractor as we thought that he may be favouring one side because it of that but I have since read of someone elses child favouring one side. He is asleep at the moment but will check tomorrow to see if the flicking stops when he is in that position. Also he doesn't turn toward sounds when he is looking that way and will only turn when touched. He also tends to stare upwards and seems to be fascinated by light fittings, could this be because he isn't seeing much more than a difference between light and dark. Doctor checked for cataracts and said that pupils were dilating as expected. One last thing he still goes cross eyed quite a lot especially when tired or when concentrating on something.

Sorry for the long post and we will be really grateful for any and all info.
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  #3  
September 20th, 2007, 03:42 PM
pattyandthemoos's Avatar Administrator
Join Date: Feb 2004
Location: Michigan
Posts: 61,640
There are many reasons for nystagmus and some of them are not as serious as others. I agree about the internet. When Brandon was first diagnosed I started reading up on nystagmus and I assumed the worst. Brandon's vision is really good now and his nystagmus is hardly noticable now. I only see it once in a while and it used to be extremely noticable.
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