What is Nystagmus
Nystagmus is rapid involuntary rhythmic eye movement, with the eyes moving quickly in one direction (quick phase), and then slowly in the other (slow phase). The direction of nysta...
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my 2yr old daughter
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hi all,
my daughter who is 2 next month has congental nystagmus, worst part about it is i dont know how its affecting her. she had an electro diagnostic sight test done the end of febuary and i still havent had any results back yet. she also see's a peadiatrician regarding her slow developement but we have put it down to her having nystagmus, shes still not walking yet and seems to be wobbily when shes stood up. they told me they have recieved some results back from her sight test and they have told me she has not got a problem with her retna or the back of the eye where the nerve connects from her eyes to her brain but there is a problem with the front of her eyes, they also told me i will be recieving an appointment very soon to see her eye speciallist and he would explain more. i just wish he would hurry up about it because i want to help her the best i can, i feel i cant help her fully because i dont know what she see's or doesnt see. ok yea i keep an eye on her to try and work it out for myself but its not that easy. its a nightmare because i have been told that my new baby has an 80% chance of having it but she cant be tested untill shes 6mth old. also my eldest child (my son), is potty training and he's also a pain at times and seems to get quite jelous when im paying attention to the other 2. but i need to because i need to work out how i can help my daughter with her nystagmus. i have read that in all cases of nystagmus, it affects their eyesight in some way or another. also i have read that they can have tunnel vision, colour blindness etc. i just want to know. i have also heard that i can have her registered as blind because she has it, but i was told by her specialist to wait untill the results came back. i have also applied for DLA for her but was turned down because she is not 3 years old yet. just wish they would hurry up and see her so they can enlighten me. Posted on 05/24/09, 06:05 am |
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I'm just courious has your daughter had a brain MRI and if so have they checked her for Chiari 1 Malformation? 
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no they have never offered her one
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Hi,
So sorry to hear of the problems you are experiencing. I can certainly sympathize. This is a short list of the people in my family who have Congenital Nystagmus: * My grandfather (now deceased) * My aunt * My cousin * My mother * My brother * My youngest son All of those in my family have varying degrees and disabilities with CN. It does cause some sort of visual impairment in all of those who have it (at least as far as my family is concerned). My youngest son wound up having to have surgery because of it when he was five. People with CN will typically turn their heads to a certain point where their eyes move the least and their vision is their best (although not to a great degree). This is called their "null point". You might also observe their heads moving along with the Nystagmus trying to compensate for the eye movement. My son's "null point" was so far off that he almost had to touch his chin to his left shoulder to find that null point and to try to see things the best he could. Not only would this have been socially awkward for him, he would never have been able to drive because he would have had no peripheral vision to his right. So, he had what was called the "Kastenbaum Procedure". It greatly improved his head turn, although not completely. He also still moves his head at times to compensate for the eye movement. You will find as your daughter gets older that the Nystagmus will get worse when she is tired, anxious, nervous or upset. I can give you more info if you need/want it. Best wishes to you and I hope that everything works out for you and your family. Anita
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