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Nystagmus Lock Rss

Hi,

My 4 1/2 month old baby girl has Nystagmus. We have a appointment with a eye speacialist this afternoon. I am just looking for other parents that their babies have Nystagmus.
DD2 will be 4 in July and she has nystagmus. She was also born with Congenital Glaucoma so has poor vision from that condition. Interested to know how you go.
Hi Sarah_Jason,
My little boy was diagnosed at 5 mths with intermittant vertical Nystagmus.
He is now 16mths and after all the tests including MRI, EEG, Lumbar puncture, Xrays, Bloodwork, Urine, Stools and Cranial and abdominal ultrasounds, he was found to be otherwise healthy and it was put down to what they call idiopathic.
This means, there is no known cause. He also has astigmatism but at this time, his sight is still quite good.
He has moments lasting approx 30 mins at a time where his eyes will start "bouncing" for lack of a better word.
While its happening, he seems abit off balance and can get cranky.
I have started a support page on Facebook called "People and Parents of Nystagmus" Please feel free to come join us.
There is also another Facebook page called "American Nystagmus Network" the members on there are great and a wealth of knowledge when it comes to anything Nystagmus, so its definetely worth a look.
I know how hard it can be, I have 3 other children with no problems at all and we cant find anyone in any of our families that have this, so its just one of those things unfortunately.
I hope you can find some support and please feel free to pm me anytime smile

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