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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My son at three is diagnosed with ONH.
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My son is three and was diagnosed with ONH this week. I noticed a year ago that he had a "lazy eye" known as amblyopia. I took him to the only pediatric optometrist around here. They put him in glasses and basically did nothing more. As I began to talk to others I was concerned with the treatment that he was getting and found out about a great eye place to take him to. It's an hour and half away but the had a pediatric opthamologist. I went there this last week and that was when I found out he has ONH along with amblyopia and strabismus. I found out he is not even seeing out of his right eye and extremely far sighted in his left eye. I was in complete shock this week because I wasn't expecting to find all this out. I didn't even realize his vision was that bad. My son had never complained about not seeing things. Now I am looking for support groups and information to help my son. If you can suggest organizations, support groups, and anything else that may help me with my son. Please send over the information to me. They are doing surgery on my sons eyes on May 11 to correct the amblyopia and from there they will be able to determine to what extent the ONH has impacted his vision. As of right now, he has been prescribed stronger glasses and we have to wait. Thanks for your time!
Posted on 03/29/09, 05:03 pm |
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My son was diagnosed with ONH and nystagmus at 2 months old. We figure he has about 20/400 vision, anything worse than 20/200 is legally blind. I found a great program that has been a huge help to us. It's called the birth to three early intervention program. They test your little one in 7 different developmental categories, if your son is at least 25% delayed in just one of those, he will get amazing health insurance, and it covers everything! We have a family resources coordinator who gets lots of info for us. My son has speech therapy, motor therapy, and gets in home visits. I haven't had to pay a dime, not even co pays. My son's trips down to the children's hospital for check ups on his eyes (2hrs away) are covered, I can even get gas vouchers. I would look up the program and see if you can get your son evaluated. If you have any questions for me you can message me :)
-Ellen- 
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Hi. I was diagnosed when I was a little girl, between 3 months and 3 years old. I am 23 now and I live on my own. I'll tell you now that he will go through a lot during school. But if you fight for what he needs, He will succeed. I was mainstreamed all my life, ad now, I am going to become a Teacher of the Visually impaired so that your kids can get the help and attention they deserve.
If you have any questions, post them on the discussion board and I will help.
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My son was diagnosed with ONH when he was 5!! Right before kindergarten. The news was devastating to me, but my son didnt understand. The Drs never provided much information other than "he's blind in one eye". I have done some research and there is another disease which is also associated called septo optic dysplasia. This can impact their brain functions as well. Causing issues focusing, impulse actions, etc. When I brought my son to his primary recently to talk about his issues that are getting worse, I asked her about that. There is a simple test they can perform for people with ONH also, just an MRI. We will be getting that done soon.
My son had the same symptom, lazy eye, which was my initial reason I brought him in. They said he would grow out of it. HA, couple years later, oops, he's blind. UGH. My son is now 8 and he just says its dark out of that eye. No movement, shadows, etc. If at anytime you want to chat, I'm here. I am also looking into getting him to a neurologist and endocrinologist. The more you research, the more you find. I hope all goes well with your son for his surgery. You both will be in our prayers. {{HUGS}} Crystal
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Thanks so much for the information and the support. Also know that if any of you need to talk. I am also here. My son had surgery this week to correct his strabismus. Now after his eye heals we will start some therapy to see if vision will come back into his eye. If not then it will be determined that he is blind in his right eye due to the ONH. Thanks once again for the info.
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It might not, but then again, it migt. It depends on the child. I can't see in my right eye, and I sometimes hate not using my right eye, even though I strain it a lot. When you see if his vision comes back, tell him not to strain his eye, it can cause eye pain or headaches, slight to moderate, but headaches nonetheless. I hope that it's not from the ONH, although it affects both eyes in most cases. You as a parent can learn about blindness from www.nfblink.org or from Hadley School for the blind http://www.hadley.edu check those out. They'll help with any questions.
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My son has ONH in his right eye and today at the doctor, they said that he can get the corrective surgery for the amblyopia. Does anyone have any information on the surgury?
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