Thursday, January 27, 2011


Turns out that my little man's condition is not only about the eyes but also about the head tilt. For those of you that don't know my son, Tegan, has a condition of the eyes that he was born with called Nystagmus. I noticed it when he was around 2 months old. Nystagmus is a condition where his eyes move from side to side. He doesn't have the control over his eyes that most people do so it causes him to look like he is scanning the room. One plus about Nystagmus is that it can never get worse and sometimes it can get a little better with age. The bad thing about nystagmus is that it isn't going to go away and there is no cure for it.
Tegan has been one lucky little boy when dealing with Nystagmus. So far it doesn't really affect his vision which is usually the case. He has great depth perception which is also a big issue for Nystagmus patients. His eyes have slowed down a lot as he has gotten older and there are times that you can't even tell that he has an issue. But then there is the head tilt. To see things in the distance or that are not right in front of his face he has to tilt his head to the left, look out the corners of his eyes to the right and up a little. This is called his Null point...the point where he can control his eyes, stop them from moving and see.
Yesterday we took him for his eye appointment at Emory Healthcare. The Dr. has presented us with two surgeries that may help Tegan and help his issues with the head tilt. Although the surgery has nothing to do with helping him to control his eyes it will end up helping him with that. The first surgery is OUT OF THE QUESTION in my mind. The second is something called the Kestenbaum Surgery. They will literally go in to his eye sockets and turn his eyeballs. They will turn them to the point where his null point will then be looking straight forward instead of him having to tilt his head. If they can do this then it may also help with the movement but that isn't promised. It is a pretty big deal to have this surgery b/c it can be so great or it can not help at all or it can go really wrong.
Here is our dilemma...Tegan is this perfect happy little boy right now. He is healthy and has no issues . It is hard to put your kid through a surgery when they seem so OK right now. But then there is the head tilt. I fear the meanness of kids as he gets older. I don't want him picked on for having that tilt. But even more so I don't want him to start to develop neck and/or back problems due to the tilt. It is such a hard decision to make. The Dr. is very nice but she isn't a very confident Dr. and that is something that I look for in a Dr. that will be cutting in to my sons eye sockets!!! My husband isn't thrilled about the idea of surgery and he doesn't see any reason to consider it right now but I feel differently. I feel like it should be done before he starts big kid school and before other kids really start to point it out. I wish I knew what the best answer was and mostly wish I could find just one person who has had this done and what they think about it now! I hate making decisions like this!

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