Post by Amy Lombardi on Apr 1, 2009 8:41:28 GMT -5
Subject: Is there a certain "look"?
Name: Chris Geer
Date Posted: Dec 28, 08 - 4:40 PM
Email: Click here to Email
Message: I am seeing some changes with Jacob and his eyes. He had his vision checked a couple mos. ago and that is still fine. I don't think what I am seeing is a result of any vision loss. We are failry certain he is having more seizures. He is having another VEEG on the 7th to verify that. His seizures are mostly Petit mals. When he first started having seizures 1 1/2 yrs ago, he was doing the eye rolling up kind and often tilting his head back. His eyes just seem different. Not just tired looking although he is always tired. Him being tired is not new. His eyes are hard to describe. Maybe a bit more droopy but also looking upward a lot. If that makes sense. It's not just us noticing it but others as well. My Sister In Law was here yesterday and she commented on his eyes "doing different things". His last MRI was a yr ago and it was normal. Any thoughts on this? Would you ask for another MRI? He goes back to the Eye specialist in March but I can go sooner if need be.
Name: Glenda Flatt
Date Posted: Dec 28, 08 - 6:04 PM
Message: Our son Nicholas has done this for 1 year or so. It is pretty common for him now. (the looking up thing) We don't always know when he is having seizures, sometimes he just doesn't respond to us and we know.
He surprised us yesterday...he just started crawling and playing in the floor again, just out of the blue. He is 16 and had been just sitting on the couch playing, pretty much all the time. We do walk him as often as he feels like it, but now all of a sudden he is going where he wants! With this disease you never know what to expect!
Take care!
Glenda Flatt
Name: Corrina Dahl
Date Posted: Dec 29, 08 - 11:17 AM
Message: I know with Clifford's eyesight loss that his vision was "up". He would look up in order to see what was in front of him. Even during the time when we had no clue he was going blind, looking back I can see signs that his vision was was worse at the bottom than at the top. We would have his baby brother on the floor (he was just a few months old at the time) and Clifford would just walk right over him. At the time we, of course, thought he was just being careless, however, it is not pretty clear to me that he simply could not see his brother.
In short, I think its possible that while there is no "change" registered in the exam in your son's vision the area of his eye where he actually sees may be higher than it was.
Name: Jo Ann
Date Posted: Jan 1, 09 - 5:21 PM
Email: Click here to Email
Message: Hi I am not sure what look your referring to, but when Jenna's vision changed she started looking to the side so it seemed she was only having vision if her eyeball moved that way. I was told that Jenna has islands of vision. She does not have anymore central vision and that has been since February 2000. So that may be what happened the vision is now in moving islands so he may start looking in different directions to actually see if it the same scenario. It was described to me as a kaleidescope and Jenna looks through the pieces. Hope this helps.
Name: Tami
Date Posted: Jan 10, 09 - 12:30 PM
Message: My daughter used to do that all the time, I was told that she really only had her peripheral vision so she would hold her head up to look at things. I remember her holding my face close to her and she would tilt her head way up, she said "to look at my face."
Name: Chris Geer
Date Posted: Dec 28, 08 - 4:40 PM
Email: Click here to Email
Message: I am seeing some changes with Jacob and his eyes. He had his vision checked a couple mos. ago and that is still fine. I don't think what I am seeing is a result of any vision loss. We are failry certain he is having more seizures. He is having another VEEG on the 7th to verify that. His seizures are mostly Petit mals. When he first started having seizures 1 1/2 yrs ago, he was doing the eye rolling up kind and often tilting his head back. His eyes just seem different. Not just tired looking although he is always tired. Him being tired is not new. His eyes are hard to describe. Maybe a bit more droopy but also looking upward a lot. If that makes sense. It's not just us noticing it but others as well. My Sister In Law was here yesterday and she commented on his eyes "doing different things". His last MRI was a yr ago and it was normal. Any thoughts on this? Would you ask for another MRI? He goes back to the Eye specialist in March but I can go sooner if need be.
Name: Glenda Flatt
Date Posted: Dec 28, 08 - 6:04 PM
Message: Our son Nicholas has done this for 1 year or so. It is pretty common for him now. (the looking up thing) We don't always know when he is having seizures, sometimes he just doesn't respond to us and we know.
He surprised us yesterday...he just started crawling and playing in the floor again, just out of the blue. He is 16 and had been just sitting on the couch playing, pretty much all the time. We do walk him as often as he feels like it, but now all of a sudden he is going where he wants! With this disease you never know what to expect!
Take care!
Glenda Flatt
Name: Corrina Dahl
Date Posted: Dec 29, 08 - 11:17 AM
Message: I know with Clifford's eyesight loss that his vision was "up". He would look up in order to see what was in front of him. Even during the time when we had no clue he was going blind, looking back I can see signs that his vision was was worse at the bottom than at the top. We would have his baby brother on the floor (he was just a few months old at the time) and Clifford would just walk right over him. At the time we, of course, thought he was just being careless, however, it is not pretty clear to me that he simply could not see his brother.
In short, I think its possible that while there is no "change" registered in the exam in your son's vision the area of his eye where he actually sees may be higher than it was.
Name: Jo Ann
Date Posted: Jan 1, 09 - 5:21 PM
Email: Click here to Email
Message: Hi I am not sure what look your referring to, but when Jenna's vision changed she started looking to the side so it seemed she was only having vision if her eyeball moved that way. I was told that Jenna has islands of vision. She does not have anymore central vision and that has been since February 2000. So that may be what happened the vision is now in moving islands so he may start looking in different directions to actually see if it the same scenario. It was described to me as a kaleidescope and Jenna looks through the pieces. Hope this helps.
Name: Tami
Date Posted: Jan 10, 09 - 12:30 PM
Message: My daughter used to do that all the time, I was told that she really only had her peripheral vision so she would hold her head up to look at things. I remember her holding my face close to her and she would tilt her head way up, she said "to look at my face."