Crazy Eyes and Mommy
Mommy took me to the eye doctor today. I'll let her tell you what we found out:
I took Drew to a pediatric Ophthalmologist today. Nice, nice lady - I was very pleased. She diagnosed him with nystagmus - which, by the way, came as no surprise to me at all. I have a healthy dose of it myself and is likely how he got it. If I didn't have three major things wrong with my eyes and spent a day each year of my life in an ophthalmologist's office; then maybe I would be surprised or worried or whatever. But, frankly, I'm so used to eye doctor offices - including that I worked in one for three years - that it's just old hat. In fact, I feel a special connection to Drew now. Well, I obviously already felt a special connection. But I REALLY do now. The problems I've had have at times been so incredibly frustrating. I'm so glad Drew will have my understanding as he goes thru potentially the same aches as I did. What the heck am I talking about? Here's a breakdown ---
What is it? Nystagmus is a jittering or oscillation of the eyes (technical def: an involuntary rhythmic shaking or wobbling). I have what they call "latent" nystagmus. Mine is severe when one eye is covered or I attempt to view something using binocular vsion (for instance: the eye test at the BMV, I can't do it, my eyes shake too much and I can't focus on the letters to make them out. Can't tell you how many times I've argued with the ever-so-congenial BMV employees over this). Drew has, from what they can tell so far, just regular ol' nystagmus. His eyes seem to be floating all the time.
What caused it? Not sure what caused mine, but the opth. thinks Drew's is due to a condition she thinks he has called "albinism" (think Albino). Albinism basically describes the presence of little or no pigment in the eyes, hair, and skin. If you've seen Drew you've surely noticed his extremely fair skin and blondish, red hair. Apparently, people with albinism ALWAYS have vision problems. According to a website on the subject: the poor vision is a result of abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. Nystagmus being a muscle disorder is ultimately a result of this albinism. So, by the way, is strabismus (crossed eye), sensitivity to light and glare, and astigmatism (misshapen cornea - which a lot of people have unrelated to any of this other stuff). All of which I have except the sensitivity to light! I've never been told I have albinism (ocular or otherwise) so I guess I just got lucky and got all three of these things anyhow. OH, also, apparently it's a misconception that people with albinism have red eyes and white hair. Not true - they in fact usually have grayish blue or sometimes light hazel eyes and blond or red hair.
What does this mean? The short of it is that Drew will almost certainly need glasses. He refracted at a +3.25 (which is pretty far-sighted-- minus numbers are near-sighted, plus numbers are far-sighted: has to do I think with the convex or concaveness of the refracted lens you need to fully correct to 20/20). We won't really know for sure how bad his vision is though until he can have a full exam in a year or so (I got my first pair of glasses at 18 months after muscle surgery for my strabismus and nystagmus). Some other side-effects of nystagmus, which I've struggled with my whole life, are poor depth perception (anyone who has ridden in a car that I'm driving knows all about that), no binocular vision, strange head tilts (look at me sometime when I'm watching TV or work on my computer - I have to turn my head a little to focus), clumsiness and poor hand-eye coordination (THAT would be why I didn't make it in the WNBA!) Basically to me, it just made reading notes on the screen at school a little more frustrating, reading books a little more tiresome, playing sports a little harder, and driving at night a little more challenging. The lack of depth perception really affects much more than you may realize. You know those puzzles that were popular in the 80's that you stared at for so many seconds until you saw the hidden image? Yeah, well... I never saw the hidden image. Remember the 3D movies with the 3D glasses? uhhh... yeah, nothing ever looked 3D to me. You know those touristy binocular thingys that are set up on top of large buildings to look through and see a whole city? Can't do em' unless I hold down the button and stand back a ways and look thru. I could go on... To summarize though, it's a pain and annoying but not at all life hindering. I never considered it a handicap or thought I couldn't do something because of it. Look at my career - I'm a graphic designer for goodness sake. So, I'm not worried about this affecting Drew's quality of life. And with glasses, the oscillation will not be noticeable. It may just be frustrating at times to him. And when it is, I'll be there to understand and remind him that it could be much worse!
I took Drew to a pediatric Ophthalmologist today. Nice, nice lady - I was very pleased. She diagnosed him with nystagmus - which, by the way, came as no surprise to me at all. I have a healthy dose of it myself and is likely how he got it. If I didn't have three major things wrong with my eyes and spent a day each year of my life in an ophthalmologist's office; then maybe I would be surprised or worried or whatever. But, frankly, I'm so used to eye doctor offices - including that I worked in one for three years - that it's just old hat. In fact, I feel a special connection to Drew now. Well, I obviously already felt a special connection. But I REALLY do now. The problems I've had have at times been so incredibly frustrating. I'm so glad Drew will have my understanding as he goes thru potentially the same aches as I did. What the heck am I talking about? Here's a breakdown ---
What is it? Nystagmus is a jittering or oscillation of the eyes (technical def: an involuntary rhythmic shaking or wobbling). I have what they call "latent" nystagmus. Mine is severe when one eye is covered or I attempt to view something using binocular vsion (for instance: the eye test at the BMV, I can't do it, my eyes shake too much and I can't focus on the letters to make them out. Can't tell you how many times I've argued with the ever-so-congenial BMV employees over this). Drew has, from what they can tell so far, just regular ol' nystagmus. His eyes seem to be floating all the time.
What caused it? Not sure what caused mine, but the opth. thinks Drew's is due to a condition she thinks he has called "albinism" (think Albino). Albinism basically describes the presence of little or no pigment in the eyes, hair, and skin. If you've seen Drew you've surely noticed his extremely fair skin and blondish, red hair. Apparently, people with albinism ALWAYS have vision problems. According to a website on the subject: the poor vision is a result of abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain. Nystagmus being a muscle disorder is ultimately a result of this albinism. So, by the way, is strabismus (crossed eye), sensitivity to light and glare, and astigmatism (misshapen cornea - which a lot of people have unrelated to any of this other stuff). All of which I have except the sensitivity to light! I've never been told I have albinism (ocular or otherwise) so I guess I just got lucky and got all three of these things anyhow. OH, also, apparently it's a misconception that people with albinism have red eyes and white hair. Not true - they in fact usually have grayish blue or sometimes light hazel eyes and blond or red hair.
What does this mean? The short of it is that Drew will almost certainly need glasses. He refracted at a +3.25 (which is pretty far-sighted-- minus numbers are near-sighted, plus numbers are far-sighted: has to do I think with the convex or concaveness of the refracted lens you need to fully correct to 20/20). We won't really know for sure how bad his vision is though until he can have a full exam in a year or so (I got my first pair of glasses at 18 months after muscle surgery for my strabismus and nystagmus). Some other side-effects of nystagmus, which I've struggled with my whole life, are poor depth perception (anyone who has ridden in a car that I'm driving knows all about that), no binocular vision, strange head tilts (look at me sometime when I'm watching TV or work on my computer - I have to turn my head a little to focus), clumsiness and poor hand-eye coordination (THAT would be why I didn't make it in the WNBA!) Basically to me, it just made reading notes on the screen at school a little more frustrating, reading books a little more tiresome, playing sports a little harder, and driving at night a little more challenging. The lack of depth perception really affects much more than you may realize. You know those puzzles that were popular in the 80's that you stared at for so many seconds until you saw the hidden image? Yeah, well... I never saw the hidden image. Remember the 3D movies with the 3D glasses? uhhh... yeah, nothing ever looked 3D to me. You know those touristy binocular thingys that are set up on top of large buildings to look through and see a whole city? Can't do em' unless I hold down the button and stand back a ways and look thru. I could go on... To summarize though, it's a pain and annoying but not at all life hindering. I never considered it a handicap or thought I couldn't do something because of it. Look at my career - I'm a graphic designer for goodness sake. So, I'm not worried about this affecting Drew's quality of life. And with glasses, the oscillation will not be noticeable. It may just be frustrating at times to him. And when it is, I'll be there to understand and remind him that it could be much worse!
Thanks for explaining Nystagmus and what it could all mean for Drew. It is good that you'll be able to relate to any challenges he'll face with it.
That's great that you set up a blog - I love reading blogs. I need to write in my art blog and our caseyandkristi.com website more. I recently posted some pics of Casey, Grant, and Walt from the Cardinals baseball game on the caseyandkristi.com website.
See you soon!
Kristi
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Hi,
I'm guessing from your post, you found www.albinism.org, the web site of NOAH, the National Organization for Albinism and Hypopigmentation.
There is also the American Nystagmus Network (ANN) www.nystagmus.org
I'm active with NOAH and it is a great organization. Not a pity party, but a celebration of difference. I agree with your perspective that it is not a hindrance, just a pain in the butt some times.
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Have a look at Dr. Robert Burnstine, M.D., director of pediatric ophthalmology at Akron Children's Hospital. He has an operation now for Nystagmus. It's called "Horizontal Tenotomy" And can correct Nystagmus by about 25%...
https://www.akronchildrens.org/cms/doctors/e5c0058bd4a5c74a/index.html
Kindly have a look at my blog as well, http://www.theperfectfocus.com/ You, might be able to offer some insight too...
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