What is Optic Nerve Hypoplasia
Optic nerve hypoplasia is a medical condition that results in underdevelopment of the optic nerves. During the second month of pregnancy, a structure called the optic stalk develop...
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Looking for Help w/ONH
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After searching forever for a place where I can talk to other parents, here I am. My son was always told he had 20/20 vision until his 5 year checkup when I moved out of state and was told his vision was 20/200. My questions were never answered. The more and more I look online, the more scared I get. Tests and monitoring that SHOULD be performed, are not and never were. I am starting to wonder if his behavior issues are related. When he was younger, he was always social and wanted to help people, now he is very angry and moody. Wants things his way or no way. Hes talking back. I thought this is normal child behaviors, but it seems like much more. I dont know anything anymore because no drs will help. Does anyone have any advice, other than "he's just blind in 1 eye?"
Posted on 03/27/08, 04:03 pm |
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your story kind of reminds me of my stort.
When I was 5 years old my mom was getting me ready to go to a halloweeen party at school. She was doing my face paint and with the way she was holding my head she was covering my right eye. and then i said to her "mom you are covering the eye i see out of." I will honestly never forget the look on my moms face, right away she was calling the eye doctor. I went for tests and was diagnosed with ONH. I am now 18 and still cn not see much of anything out of that eye. If this condition is only in one of you sons eyes i wouldnt worry to much about it. i know it may seem strange to you but for him it is normal, he has never seen with both eyes so only seing out of one isnt harming hime any. it makes me laugh when people ask me if it is weird seeing with only one eye and i say no, is it weird seeing out of two. I dont know any other way, so this is normal for me 
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Below are links to video clips from a local news station that has been following Carl’s story and progress.
Video prior to treatment http://ozarksfirst.com/content/ful... Video post treatment http://ozarksfirst.com/content/ful... Video update http://ozarksfirst.com/content/ful...
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My daughter also has the one eye that is a problem... She is great otherwise and I know you have researched as much as we did, You really seem to be having a mild case much as we do. I can say part of the behavior issues seem to be tied to the ONH in that she has some OCD issues. Maybe this helps:)
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My son was diagnosed with ONH and Nystagmus at about 2months of age. We go to the Seattle Children's Hospital for check ups since there are no specialists that do pediatrics in our area. It was SO SCARY! There is not a lot known about the disease. No cure or treatment that I know of. It is hard to tell how well my son can see, but the ophthalmologist (who your son should be seeing) said their best guess is he sees 20/400 out of both eyes. Anything worse than 20/200 is legally blind. My son had to get an MRI at 6 months :( to make sure there is nothing wrong with his brain. I would suggest getting that done. Problems with the pituitary gland can come hand in hand with ONH. This can cause growth problems. My son's growth is closely monitored. The growth problems could pop up at almost any age. There can also be problems with the sex hormones too, maybe your son is having mood swings? Too much testosterone? Get ahold of a endocrinologist, and an ophthalmologist to have his vision evaluated, and his hormone levels looked at. Educate yourself. If you have any questions feel free to ask me. We've been dealing with it for over a year now.
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My daughter as I have said has ONH in one eye only... She has been very large and we have had behavioral issues she was just diagnosed with CPP - research it. We went to an endo and were diagnosed it may not be what you are dealing with but the tumor that is causing it was not found when she had her first MRI at age 1 she is 5 now the tumor actually sits on the Optic Nerve of the eye she is blind in. It has caused her to have a large overflow of hormones and even has caused her to be in stage 4 puberty at age 5 (normally at 13 to 14) I do not know if there is a link between the two but it all seems kind of strange that it would not all be tracked back to the tumor???
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