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Newbie: 4 year old daughter diagnosed w/ Ocular Albinism, Strabismus, Nystagmus


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  #1  
January 24th, 2009, 03:54 PM
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Join Date: Jan 2009
Posts: 1
Hello my name is Vanessa and I am a 28 year old mother of a beautiful 4 year old daughter named Kendall.

She was born with Ocular Albinism and diagnosed with it at 6 months. She also had a real bad case of Nystagmus that is not quite as noticeable but it's definitely still there. The strabismus has always been there but has recently gotten much much worse. We have been patching her on and off for the past 3 years. The reason I say on and off because she refused to wear it during ages 2-3. But has gotten much better the past year.

Can you please share your stories on your children if they have Ocular Albinism, Strabismus, Nystagmus? When did they become diagnosed? Do you do or use anything special? Do any of your children wear glasses? The more information you can share on this the better. Thanks.
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  #2  
January 25th, 2009, 04:34 PM
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Join Date: Oct 2007
Location: Winston Salem NC
Posts: 248
Hi my anme is Lindsay and I am new to this board as well, not to Jm. Welcome!!! My son Dylan ws diagnosed with Congenital motor nystagmus at 4 months....we were told that he may eventually go blind or he could lead a perfectly normal life!!! We have been to 4 drs, to get different opinions...we are going to Akron childrens hospital in april to see a dr that does the horizontal tenotonmy surgery. I have communicated with the dr and sent all MRI,CT, EEG and other reports and he believes he can really help Dylan...

Have you ever heard of that surgery?

I would love to hear what all you have gone through the past few years dealing with nystagmus...
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  #3  
January 29th, 2009, 08:56 AM
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Join Date: Oct 2008
Posts: 149
My 4 year old has strabismus (among other issues). We first noticed it last summer just a couple months before she turned 4. She kept closing 1 eye. When we got her to the pediatric ophthalmologist, she said our dd’s vision in that one eye was very poor so she stopped using it. As a result it went “lazy.” First she got glasses to improve her vision. After a month of glasses, she got a patch. First we did the patch 24 hours. That gave her much improvement but hasn’t totally fixed her eye so we are still patching 4 hours a day. Luckily, we got a pink and a purple patch so she was okay with it. She does complain now and then (like when she hits her head due to her monovision) but it’s not bad.

Lindsay - I'm not sure about the tests that you posted but my dd is having an ERG (electro-retino-gram) next week. They are going to test the activity in her retina. She has choroideremia which is also a blinding condition though girls are usually just carriers while boys get the full onset of the disease. it's unusual for a 4 year old girl like her to show symptoms. I'm glad you are at the Children's hospital. We've been going back and forth between our Children's Hospital and the Eye hospital.
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  #4  
August 19th, 2009, 05:04 PM
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Join Date: Aug 2009
Posts: 2
My three and a half year old daughter turns her head mostly to the left and looks out of the extreme corners of her eyes when looking at distance (ie. television, in the car, looking at something far away). The opthomologists (3) say that she does not have strabismus, nystagmus etc and say she'll outgrow it. An optomitrists said she has exotropia and needs vision therapy. We tried the vision therapy at home but it's difficult to get her to complete the exercises. She trips a lot and has difficult going down the stairs. Otherwise she seems to be developing normally.
I appreciate any advice or source for more information on trying to figure out what's going on.
Thanks
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  #5  
October 5th, 2013, 11:47 AM
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Join Date: Oct 2013
Posts: 1
I have 3 children, 1 daughter and 2 sons. My firstborn girl was diagnosed with Occular Albinism at 5 months. We noticed there was something wrong when she was 3 months old as she had very noticable nystagmus (eye movement). We did not know what kind of Dr to go to. We ended up at Children's Medical Center in Dallas where she was seen by a NeuroOpthomalogist and he was able to diagnose her immediately. So, if there is a teaching hospital in your area, I would recommend that. As I mentioned, I have 3 kids, the oldest and the youngest both have OA, but their degree is different. The son in the middle has no eye issues. My daughter is legally blind, 20/200, but my son is 20/60. My children are now adults, and all doing well. My daughter, who was told at one time, that she may not be able to read, has had the last laugh on all of them. She not only reads, but is a huge book lover and has a career as a writer and an editor! My younger boy, who has more characteristics of a visually impaired person is also sucessful in his career. Neither can drive, but that has not stopped them. I hope this is an encouragement to you.
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