K.L.
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Cleveland
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OK, you gotta help us out a bit. What is ONH?
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We were just told not long ago our youngest son has ONH..im looking for more and any info. i can get on it. We are taking him to CHILDREN'S OF LA in Jan for a research study with a dr. out there. What kinda info. can you give me that i might not know? Which probably a lot cause not many people or even doctors know much about this.
optic nerve hypoplasia-under development of the optic nerve.
OK, you gotta help us out a bit. What is ONH?
Optic Nerve Hypoplasia?
http://www.chla.org/site/c.ipINKTOAJsG/b.6051825/k.B964/O...
Good luck... hope things go well! Sorry I can't be of any help... just figured out I would post that link for people that don't know what it is.. (I didn't know either, so I googled ONH, and that is what came up.)
Oh, I'm sorry hon....I would suggest you read up as much as possible and join a support group. Here's one I googled and UCLA has a FB site:
http://www.facebook.com/pages/Optic-Nerve-Hypoplasia-ONH-...
Do you know if you'll be seeing a Pediatric Neuro-Ophthalmologist? You need to. They specialize in the both the brain and the eye. It's is often common for you child to have mid-brain malformations which will more than likely cause developmental delays or problems. So the more you can prepare yourself the better.
Unfortunately, there is no cure. There is only treatment.
Hang in there! And get all the support you can to give your son a happy life.
This is a multiple Dr. situation, as ONH involves many systems. Give this a read. Childrens of LA is the best place to be, here's their literature on ONH.
http://www.chla.org/site/c.ipINKTOAJsG/b.6051827/k.9DAD/O...
http://www.mdjunction.com/ is a site where you can look for support groups.
