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Forum: Children with Special Needs

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  #1  
September 11th, 2013, 02:29 PM
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Join Date: Oct 2008
Posts: 4
Hi everyone, I am new here. I have a step son with autism & type 1 diabetes. I also have 2 sons of my own who are the main reason why I am writing right now.

My sons are 6 and 7 years old and are extremely near sighted and night blind. I had been mentioning the night blindness issue to the different eye doctors that we've seen in the past and nobody ever seemed to think that something could be seriously wrong. I was told over and over again that it's simply harder to see in the dark, and even more so if you have poor vision.

To make a long story short, 2 weeks ago their doctor ordered a tomography that showed an inflammation in the central part of their retina's, and everything has changed since then. Three different retina specialists reviewed the photos and decided to refer us to a pediatric retina specialist. We had that appt on Monday and I was told that my son's have abnormally large-oval shaped eyes, which is something that one can't notice as it's the back part of the eye inside the head. The pediatric retina specialist mentioned being concerned about whatever it is that's in their retina and the fact that they can't see in the dark. They did all kinds of tests and referred us to the genetic department for further testing and an ERG (electroretinogram), and we're supposed to go back and see the pediatric retina specialist after all that is done.

We have not been given a diagnosis, we don't know if what they have is progressive or not, we don't know anything. Apparently the ERG will give us clear answers.

I am sorry to vent but I have to admit that I am terrified at the thought that my children might be going blind.. I am so sad and scared for them. The genetics dept is coordinating all the testing and supposed to be calling me soon to get everything hopefully scheduled for the same day.

I and everyone in my family has great vision so I don't understand what is happening.. thanks for listening.
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