My two year old son has congenital stationary night blindness?

Question

My two year old son has congenital stationary night blindness, and really badly short sighted during the day and has two lazy eyes, but the doctors talk in doctor jargen. I understand the basics and have made my house safe, and i know there is no cure. But can some one explain to me, how to make things better for him and exactly what it is?

Answer 1

I have night blindness; the side affect from a neurological illness.
It's not exactly the same thing as UR sons.
But I've learnt 2 cope around it & apart from being hesitant of going out a night, I'm ok.
He'll B fine, but 2 find out as much about as U can, from Docs & the like U should B well equiped 2 know what 2 expect later on.

Answer 2

I don't know much about CSNB (I still have a few years left of school) but let me try to explain what I think I do understand. And I'm sorry if I explain things you already understand.
Our eyes have things called photoreceptors that pick up light. There are cones that are used more for our central vision and these specialize in picking up color vision - cones work better in light (photopic conditions). The rods are used for peripheral (side) vision and work in conditions with lower light levels (scotopic conditions). Mesopic conditions are when light levels are low and you're using both your rods and cones.
So this is some problem with the rods. I read in my textbooks but cannot seem to find anything to explain exactly why there is nystagmus (this is not always present). Nystagmus is what might make his eyes move from side to side and not steadily fixate at something. It seems that there can be problems with the macula (the area of the eye we use to fixate - look directly at things with) but I"m not sure about this part.
My textbook recommends routine eye exminations, genetic counseling, low vision rehabilitation consultation, and possibly a mobility consultation if the patient is having problems maneuvering in the dark.
There are potentially low vision devices that could help you son - ask your doctor about finding someone who specializes in this.
One thing I read on the internet recommends definately having a night light in your childs room - Im sure you already do that because you said you make your house safe.
You also said you understood the basics - so I probably just explained everything you already know - but that is all I know as well :)
Here's a site I found that has a couple of other people with children with the same problem, perhaps you can gather valuable information here if you have not found this.
http://www.makingcontact.org/index.php?ci=405

Good luck

Answer 3

Not all doctors speak jargon, you could change your doctor and your health visiter should have any relivent help you need i.e people like you so you can share your veiws and experiences. Just remember you are not on your own, the help is there if you ask.

Answer 4

that is not a question