Wednesday, January 9, 2008

Nystagmus

So far that is our diagnosis. I haven't wrote anything about Tegan's issues b/c I was wanting to know more about what is going on. His eyes move from side to side alot, the first three months he wasn't showing signs of seeing, He doesn't have good body tone (which is how he holds himself up....like his head), he is behind in several developmental areas. I started getting a gut feeling at around 2 months that something was wrong but tried to ignore it until I gave in at 3 months and took him to the Dr. They immediately suspected something wrong with him and I was so devastated. Now here we are about six weeks later, an MRI, blood work, urine test, one ophthalmologist in Athens, a pediatric neurological ophthalmologist at Emory, and several visits to his doctor have all occurred over the past few months. I Have really been working with him on his tone and doing lots of strength work outs with him and he is showing great signs of improvement in that area...as you can see from some of the recently posted bumbo pictures. But yesterday we were informed that he still isn't where he needs to be. He has started showing signs of seeing over the past few weeks and he is making great progress with that. He has started following toys and looking at our faces and smiling about two months late but better late than never. Although his eyes still move from side to side, that has improved somewhat also. At Emory the Dr. there said that he had Nystagmus, which is a condition of no eye control. Some people develop o.k. vision with it and some are as bad as to be legally blind. They say that their vision and the eye movement does improve with age but to what point we don't know yet. This could be causing all of his other delays since his vision is slow to develop but just in case we are seeing a neurologist at the Medical College of Georgia in Augusta on Jan. 18th. My hopes are that they rule out any muscular diseases and that Tegan will continue to improve and lead a normal life. All I can do is pray! There, you have what I know so far. There is so much more to the story but I don't want to bore everyone to death!
"I prayed for this child, and the Lord has granted me what I asked of him. So now I give him to the Lord- for his whole life he shall be given over to the Lord."
1 Samuel 1:27-28

2 comments:

  1. Thanks for posting on Andrew & Adam's blog. We'll be praying for you and Tegan. Please let me know if I can lend you an ear or anything if you need to vent, etc. lindsey@kmc.net. It is so scary to have the unknowns but God has Tegan in his hands.

    Lindsey

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  2. Hi Tab, As the parent of a newly diagnosed son with nystagmus, I highly recommend joining the American Nystagmus Network yahoo group at http://health.groups.yahoo.com. You will learn so much about diagnosis and prognosis from the hundreds of members that you really cannot learn on your own. The top researcher in the country is a contributor to the list as well as vision therapists, teachers, and adults like me with the condition. I am also doing my part to educate parents and the public about nystagmus. It's not that bad if you have the tools to deal with the inconveniences and challenges.

    Edie Glaser
    http://www.lowvisionkids.com

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