To the MOM whose child has eye problems - Children's Health Message Board

mlb · 06-19-2003, 01:36 PM

Hi, I was reading the post here and saw yours. I have made a post here before and got few responds. I have a 7 year old daughter with OPTIC NERVE HYPOPLYSIA.
I was told in the begining it could have been Glucamia(SP) My daughters optic nerves are there but are very pale. She is totallu blind in one eye and legally blind in the other. I could go on for days but don't want to alarm you. If this is what your child has please respond here.Thanks

chelespiglets · 06-21-2003, 08:06 PM

Hello MLB,
Sorry I have not gotten back to you sooner, I had surgery on Tuesday.
My daughter had to under-go tests while sleeping in the hospital, her test showed that she did not have glaucoma, its just a lazy eye and patching should help.
How did you find out that your daughter had Optic nerve hyp? What are they doing for her now? How is she doing?
Thanks for writing, but i should go lay down now.
bless you and your family
bye Chele'

mlb · 06-25-2003, 06:55 AM

Hi I noticed that at about 6 weeks old she just was not focusing on anything. The doctors blew me off and kept saying wait until next week it may get better. It never did only worse finally they told me they would send me to on optho. dr to ease your mind but nothing is wrong. Well they diagnosed her with optic Nerve Hypoplysia after giving 3 false ones. She also has septo optic dysplysia that means part of her brain hasn't fully developed either.
I was told she would never walk or talk. She is now 7 years old and is walking and talking. She is blind in her right eye and legally blind in her left. DHe is main streamed in school.
We did the patching to try to improve her right eye but I really did not help once or twice a year she has surgery to tighten or lossedn her eye muscles because of the nystagimus. Hope that your daughter is well and I am glad to hear you got a better diagnosis than you were once givin.