Special Needs
Optic Nerve Hypoplasia
I wasn't quite sure where to post this and I figured, this would be a good place to start.
My best friends 8 month old baby was diagnosed with ONH a couple months ago. They said the nerve just never developed and he is most likely completely blind. I was just wondering if anyone else had dealt with this? Or anything that helps? I guess I'm just looking for stories to help her deal with this and make life a little easier for her. Anything would help.
Thank you!!
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Re: Optic Nerve Hypoplasia
My daughter has this as well as CP from a stroke in utero. She has smaller than normal optic nerves. The thing about ONH is that it can be so varied in the outcomes.
Also some kids with ONH have SOD (septo optic nerve dysplasia) which affects growth. So that is something to be aware of.
Location is everything when it comes to what the child is able to see. Working with a teacher of the visually impaired can help. His functional vision CAN improve. The damage to the nerve is done, but how he uses it (functional vision) can get better with help.
Hopefully she has had his vision assessed by a TVI (teacher of the visually impaired) and is getting vision services as part of early intervention. Using lighted toys and a light box has helped my daughter as well as presenting things in her best visual field.
My understanding is that often around 18 mo or so you get a second explosion of visual skills. My daughter can see best peripherally.
As she gets involved with more people in the community it will amaze her how far visually impaired kids can go today even those with multiple disabilities.
There is a book called "loving Rachel" which is about a woman with a daughter with ONH. Her daughter developed a seizure disorder as well though so she had additional things going on too. I liked it because the mom was so honest in it. But it isn't exactly a "everything is going to be alright" book because honestly life is now different.
Your friend's life is going to be different than she has pictured and you are a good friend to stand beside her as she walks through this time. The best thing you can do is be there to listen.
You/ your friend can contact me at my daughter's blog: www.kelseycan.com and I will try to give her more ideas to work with him if she wants. I do not post here very often so that would be the best way to get ahold of me.
I second everything the pp said. DS has ONH. There are two forms of it: unilateral (one eye) and bilateral (both eyes). Unfortunately, at this point, there is no surgery to correct as the optic nerves are very fragile and it doesn't get any better on its own. Sometimes babies/kids with ONH also have CVI which is Cortical Visual Impairment which also affects their vision.
Her child should be working with a vision specialist at least every two weeks to get a sense of what her child can see and how best to work with him/her.
As her friend, she just needs your support. Its a very hard diagnosis to receive. GL!
I third everything that the PP have said. We found out at four months old that Lucy had ONH. I had never heard of it ever in my life and honestly, other than these boards I have not met anyone else that has been diagnosed, even with all our many visits to the Nevada Blind Childrens Foundation.
I think the only thing that is uber obnoxious for me as a parent with a special need, is I HATE when our friends and family point out that her eyes aren't the same size or any other physical abnormalities. I also HATE when my family says things to me like "She HAS to be able to see SOMETHING, shes so into everything" blah blah blah.
It really helps me more when people just ignore the negative and it would be so much easier for us if people just commented on how cute she was, how active she is, or how smart she is.
We get a lot of strangers that stop us and ask us why her eyes are two different sizes, or comment on what looks to be a lazy eye. It really hurts. And now that shes understanding so much more, I don't want her to grow up with crazy complexes...
My only advice is be there when she needs you to be for the SN, but for the most part, please please please, always treat her child like a regular child.....
(sorry if I ran off on a tangent...)