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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Anyone else coping with the news of yr childs ONH?
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Hi! Im new here but I was hoping to reach out and ask how other parents are working through the news? My child is 6 months and some days I feel ready to volunteer, create, start, work- try and really bring new things into the community and my daughters life.
Other days Im sad and feel discouraged. Not sad about her, or the ONH....but sad that Im not doing everything I can. Im a very impatient person. Am I the only mom out there who feels like this? -l Posted on 10/11/07, 05:10 pm |
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Hi, My name is Deziray, My baby was recently diagnosed with septo optic dysplasia. We've been devastated ever since. I'm a young mother and Its been hard for me to cope. So, I know how you feel. 
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You are not the only mom who feels like that! I am exactly like you. My daugher is 6 mos old and was diagnosed about ONH a few days ago. I was very emotional at first then I started (and still am) looking everywhere I can for more information about the condition, research being done, and treatments. If you've found any helpful resources, please let me know.
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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 son just turned five months old. He was diagnosed with ONH four days ago. We went to a doctor in town who told us everything was fine just a few weeks ago. When we got the news it totally caught us unaware. My wife and I both broke down and cried when we heard he would have to learn braille in order to read. After the day or so of shock we just wanted to do everything we can. It's frustrating because we don't really know what to do at this point.
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I have a 6 month old with ONH. Just recently Ive gotten very down and depressed, reaching out to others helps me, I know exactly what your going through. Feel free to email me, Jennifer0488@hotmail.com
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There is a neuropathy group, I think it will be helpful for you to join.
There are new topics everyday - a lot of research goes into the Neuropathyteam posts which provides many resources and links. Thought we could help.. http://dailystrength.org/groups/ne...
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My daughter is now 5 she was diagnosed with ONH at 6 months. Luckily we have a mild case with only one eye being affected... It really was very devastating in the beginning because I quickly jumped to the worst cases. I can say she is now in K-G and really has no problems. She plays basketball and softball and no one realizes the problem. I do know though that we have to wear safety glasses to keep the other eye from being damaged. We have lived with it for 5 years now if I can help anyone let me know:)
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I am wondering if anyone here has heard that there is now a new treatment which has been developed for optic nerve …
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 …
