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Optic Nerve Hypoplasia Question (self.Blind)
submitted by getthefacts
Hello- My 4 year old daughter has several chronic health issues, and now we're wondering if ONH is the answer. She has growth issues, blood sugar issues, on growth hormones, brain abnormalities (as seen on MRI) and now her ophthalmologist mentioned her optic nerve "looks a little small". She said it could be because she's extremely farsighted, and so the nerve can appear smaller due to the shape of the eye. I sent over her MRI images and she's going to take a look. Now I'm in limbo and waiting.
Does anyone have ONH?
How were you diagnosed?
What questions should I be asking?
Does anyone have ONH?
How were you diagnosed?
What questions should I be asking?
Sblanco19 1 points 1y ago
My son is 11. He developed a tick and also was diagnosed with seizure activity. We always thought It could be due to him concentrating on seeing something and then reacting to it.
crystalcatzz 1 points 1y ago
i was diagnosed by my eye doctor at age 3. some things my mom saw were a lazy eye and not seeing things on a certain side. i would take her to an eye doctor because they should be able to shed some light in on the issue!
EvilChocolateCookie 1 points 2y ago
I have it. I'm fine except for my vision, but other issues can develop.
Monkfrootx 1 points 1y ago
What other issues would that be? Other vision issues? Or non-vision related? Do glasses help? Have you tried things like IrisVision or SuperAppCardboard?
EvilChocolateCookie 1 points 1y ago
Glasses do nothing. I can't see anything that isn't light.
bigblindmax 1 points 2y ago
It would make a lot of sense. I was diagnosed with optic-nerve hypoplasia as a baby and then with hypopituitarism a few years later. This was in the mid-90's when the link between the two conditions wasn't as well know. I also had some serious cognitive and emotional abnormalities as a kid that I mostly grew out of thanks to speech + occupational therapies and good socialization in early childhood.
The good news is that ONH is non-degenerative and this sounds like a fairly mild case with a good bit of usable vision. I'm not qualified to go into detail about what you should be asking, but just realize that developmental issues **could** arise and can be treated.
The good news is that ONH is non-degenerative and this sounds like a fairly mild case with a good bit of usable vision. I'm not qualified to go into detail about what you should be asking, but just realize that developmental issues **could** arise and can be treated.
Monkfrootx 1 points 1y ago
>The good news is that ONH is non-degenerative
What if you start developing myopia or farsightedness with age? Will that compound and make your overall vision worse?
How is your vision generally? Can you drive?
What if you start developing myopia or farsightedness with age? Will that compound and make your overall vision worse?
How is your vision generally? Can you drive?
bigblindmax 1 points 1y ago
> What if you start developing myopia or farsightedness with age? Will that compound and make your overall vision worse?
This kind of thing happens to pretty much everyone. As I age, my vision will likewise get worse, and it will more difficult for me to to get by without reading and distance lenses. What I meant by non-degenerative is that my optic nerves aren’t getting any more under-developed. The damage is done.
I am legally blind, but just barely. I have about as much usable vision as a legally blind person can have. Up close, I’m not bad, but at a distance, I don’t see much. I also have no depth perception and my vision isn’t binocular. I’ll never see well enough to drive.
This kind of thing happens to pretty much everyone. As I age, my vision will likewise get worse, and it will more difficult for me to to get by without reading and distance lenses. What I meant by non-degenerative is that my optic nerves aren’t getting any more under-developed. The damage is done.
I am legally blind, but just barely. I have about as much usable vision as a legally blind person can have. Up close, I’m not bad, but at a distance, I don’t see much. I also have no depth perception and my vision isn’t binocular. I’ll never see well enough to drive.
Remy_C 1 points 2y ago
I was diagnosed at 6 months old when it was noticed that I wasn't reaching for toys which were placed near by. I'm 38 now. They said back then that that with that condition it was very unlikely that I would be just blind. While nothing else has officially been diagnosed, I sincerely wonder if I have a few learning psychological and emotional abnormalities. I've never been officially tested and honestly live a pretty good life. As for questions, I'm not really sure what to suggest specifically. It might be worth looking up the condition if you haven't already to see if any questions come to mind. Learning what exactly your daughter DOES see will help in time too.
Monkfrootx 1 points 1y ago
Has your vision progressively gotten worse with age? Any issues going ziplining, or things like that that may require further distance vision? Any pickiness with foods (my friend with optic nerve hypoplasia mentioned this one).
Remy_C 1 points 1y ago
Also I used to be picky when I was younger. But as an adult I'll eat most anything. anything.
Remy_C 1 points 1y ago
My distance vision has always been, and continues to be horrible. Basically the closer something is the better I can see it. But also, sometimes my brain can't make sense of what I'm seeing even when it IS close up. I need a frame of reference. I would not however say my vision has gotten worse over time. Though like I'm sure as I get older, that could still happen because of other reasons.
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