7 responses to “Reader request: Looking for other parents dealing with optic nerve hypoplasia, nystagmus, and myopia”

1. At 18 months (he’s currently 22 months) my son was found to be highly myopic. He is -15.00 in both eyes. They didn’t identify any other issues at the appointment so I can’t give you any advice on the optic nerve hypoplasia or nystagmus, but if there is anything I can help you with on the myopia part, let me know. Hang in there. I know it’s scary and traumatic to get news like this. 😦 If it’s any help, i think our son was more adaptable to it than we were. He’s doing really well with his glasses.

   LikeLike

2. You should check out The MAGIC Foundation. They are on Fb a little too…but their website is best. They have a huge group of moms and dads of SOD and ONH kids. magicfoundation.org

   LikeLike

   • Thanks for this Denise! I didn’t know it existed, I’ll add the page to our parent’s resources page.

     LikeLike

3. My 1 1/2 yro son has ONH. We found out when he was 6 month old, and have been learning and adapting ever since.

   I would love to answer any ?’s and share insight with you.

   LikeLike

4. Pingback: New eyecare links on the resources page « little four eyes·

5. I am an adult with optic nerve hypoplasia! I’ve had to have one corrective surgery for the turning of the eye but have a drivers license without restrictions and live a normal life regardless of being half legally blind!

   LikeLike

6. Yes, I also have poor eyesight and I have been wearing glasses since I was 1.0 yr old. My Rx was -10.00D for both eyes and they said my glasses were pretty thick. But, I really liked them, as I could see things that I had never been able to see before. I did not want to take my glasses off. The lenses were pretty thick (~8.0 mm), but this did not really bother me. When I turned 2, they gave be another pair of glasses that were stronger, -12.00D RE and -12.50D LE. Again I could see really well. These glasses were a bit thicker, 10 mm, but I really did not notice as I was so happy to be able to see. This continued for every year and when I started school at 6 yrs of age, my glasses were -13.50D RE & -14.50D LE and I had to sit in the front of the room in school, and yes the lenses were thicker. During the year, I got new glasses with +2.50D bifocals and I could see things close to be better and I did not have to hold things close to my glasses to see print in books and papers. At 10 yrs of age, my glasses had gotten to -20.00D for both eyes and the lenses were quite thick (~20 mm). But, I still loved them as I could see pretty well and without them, I was completely blind. The bifocals (+5.00D) did help me to see up close pretty well, but I was struggling some to see everything. So, they gave me monovision glasses with -20.00D for distance with my RE and -15.00D for my LE for close up, and again I could see well, but my glasses were now getting very thick and they changed my lenses to myodiscs that were not nearly as thick as regular lenses. Very early, it was found that I had congenital progressive myopia and my vision was dropping constantly, but they did give me glasses so that I could see pretty well and I was really keeping up with others that had good vision and did not wear glasses. Yes, there were things that I could not do, like athletics, so I did other things. I play the violin, do drawing and painting, for which they give me special glasses that are not so thick, but do give me very good vision up-close. So, I have survived up to now, 18 yrs old, and I will graduate from High School this year. So, for me and others that have poor eyesight, strong glasses do work to give us a nearly normal life. Even wearing thick glasses that have lots of reflection, they say that I do look pretty good and I have had about 4 or 5 boy friends, since the 4th grade and now I have a very dear boy friend that seems to like me very much.

   LikeLike

This site uses Akismet to reduce spam. Learn how your comment data is processed.