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Optic Nerve Hypoplasia

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  • Optic Nerve Hypoplasia

    Hi Everyone,

    I have a 5mth old daughter who was diagnosed approximately 10wks ago with Optic Nerve Hypoplasia and we have been told she has very little to no vision.
    Just wondering if anyone has had any experience with this condition, its very hard to find any information on it at all.
    I would love to get in contact with anyone who has a visually impaired child and find out anything and everything I possibly can.
    Please Help!!!!!!

    Merry Christmas Everyone:tree:

  • #2
    hmm i cant help much, but when i was 3 i fell over in the bath and burst my optic nerve behine my left eye.. i had a few opps to correct it, now its just lazy and i have about 50% vision out of it (its like when you put your eyes out of focus).. i can still read with it, i dont wear glasses either ( i did for 4 yrs when i was 3 to try and correct it)..
    sorry i cant help much..


    • #3
      Sorry never heard of it before but there are lots of support groups for children with visual impairment

      I know in the Eye Clinic at Westmead Childrens Hospital there was a poster up with the name and details of a group to join
      I'll try and find out what that was

      Try Facebook, DD has a very rare disease and an even rarer presentation of it which affects her eye and because FB is worldwide I had success in finding others with her exact problem.
      I just did a search on optic nerve hypoplasia with no success but mums dealing with bilateral congenital glaucoma would also face visual impairment in children. If you don't have success elsewhere I'm sure our group would give you support. Turns out Jade does not have congenital glaucoma but I still get lots of support from that FB group.

      Will anything be done to help correct her vision?
      Last edited by MumNeedsCoffee; 31-12-2009, 09:25.


      • #4
        She's also got bilateral Nystagmus, but there's nothing that can be done. Apparantly, your Optic Nerve is fully formed when you are born and in her case that unfortunatly just didn't happen.

        The Royal Children's in Melbourne have apparantly done successful operations on children whose Optic Nerve's havn't formed properly recently, however just saying that the Optic Nerve hasn't formed properly covers such a broad range of conditions, and I'm not sure what condition these children had.

        I spoke to her specialist and he is of the opinion that whatever they are doing in Melbourne won't help her, but I have written to the eye doctors there anyway just to try to find out what I can.

        In the US, they have pioneered a 'Bionic Eye' and now they just need to figure out which part of the brain to connect the artificial Optic Nerve to in order to allow people to see, so I guess with all these advances in medical technology something to help her shouldn't be too far away.

        Just gotta stay positive and keep trying to find out all I can!!!

        Thanks so much for the help, guys!


        • #5
          This may give you some hope as well, not optic nerve related but it's amazing what advances there are being made in regards to stem cells and fascinating to watch.

          I will keep an eye out for that poster the next time I visit the eye clinic but in the meantime I've done a quick search and found a website for Australian Association for Parents of Visually Impaired.

          I'm sure there are many others.

          You might not have got many hits here due to the rare condition, but if you're after advice on children with visual impairment if you post a thread on that then you'll probably get lots of help as theres so many things that can cause visual impairment in children.

          P.S. Sorry not much help myself, Jade has Occular Juvenile Xanthogranuloma and Secondary Glaucoma in her left eye. At one stage there it appeared she would be blind in her left eye but things have improved significantly.

          Good luck!


          • #6
            That's good to hear her condition is not as bad as first thought - that gives me hope that perhaps Maci's isn't as bad either.

            I recieved a letter from the Children's Hospital today,and unfortunatly they can't help

            Apparantly in China they are doing stem cell transplants to correct Maci's condtion, but another little girl with Optic Nerve Hypoplasia went over there for the treatment a year ago and as far as I know, she's still there.

            I agree it amazing what they can do now, I just wish a more developed country - prefferably Oz! - would allow stem cell research and treatments to help sick and disabled kids.

            Thanks for your help!


            • #7
              To Macismum

              My daughter also has Optic Nerve Hypoplasia and Bilateral Nystagmus. Jade is now 16 and about to start year 11! I am happy to provide you with any information and advice I can.
              We too are waiting for a miracle procedure to help her. We were told 16.5 years ago that there was nothing that could be done but for the last 2 years her specialist has given us hope regarding stem cell & bionic eye advancements.


              • #8
                Loukev - How is Jade finding school etc?

                My 2 year old has ONH & Nystagmus. She is the most amazing child (not that I could possibly be biased hehe). Developmentally she is ahead so far, despite her lesser vision. She is actually starting to learn her alphabet already for example.

                It would be so good to hear from someone with an older child, what to expect in the future!


                • #9
                  Hi OurLittleBlessing,

                  It sounds like your little girl is off to a great start!

                  Jade was diagnosed at approx 4/5 months old and we immediatley contacted Vision Australia who began Occupational Therapy with Jade and taught us how to stimulate her vision. Jade has no vision in her right eye and very little in her left. Jade does not use braille and uses large print and various vision aids. Oops and she uses a cane.

                  The best gift that we have given Jade is that we haven't wrapped her in cotton wool and she has been afforded most opportunities and experiences that non vision impaired children have. Letting her climb the jungle gym and climb the ladder for the slide at the park for example. Jade is very smart but it's her independance and confidence that have added the most value to the quality of her life. She is like any normal teenager that goes to the movies with friends, tenpin bowling, swimming at the beach, reading, plays acoustic and electric guitar. When Jade started year 6 she also began mobility training through Guide Dogs Australia. This training enabled Jade to get around our community independantly and catch the bus to and from school.

                  Jade is very intelligent and that was very evident from a young age and she has worked very hard at school and is always in the top or second top class. It certainly has been hard over the years to get Jade the support that she is entitled to but I fight hard for her as I was told years ago "You are the only advocate that your child will have so dont ever feel intimated to fight for their rights". Any school is there to provide a service to you and you have the right like any other consumer to expect quality. That phrase has helped me for many years.

                  Reading back through what I have written it seems so easy! No way is it though! The toughest battle for us as parents was to not hold her back because of our fears. Oh the anxiety I suffered when she started pre school, kindergarten, high school or went away on camps!
                  I know many a parent with a vision impaired child who is still cutting up their food and showering them at 12. That is not ok and I hope I dont offend anyone on here but it is not fair to the child or their quality of life (unless of course there is an associated disability that stops the child from doing it themselves). Jade has always been much more capable than I ever anticipated!

                  At the moment my mission is to teach Jade how to cook! At the moment she can make toast, heat tin spaghetti and make herself a milo! and sandwiches! Not sure that will see her through life though!

                  Jade see's a Psychologist regularly to deal with the issues of having a disability, which she struggles with and feels different than her peers and thats the one thing as parents you cant fix. It breaks my heart but I can only support her and make sure she gets the assistance she needs to help her through it.

                  I hope that my experience is helpful in some way!


                  • #10
                    Thanks so much for your reply! There is tonnes of good info there. I nearly teared up reading about your experience. Your daughter sounds amazing, and it sounds like she has been very blessed to have the Mummy that she does!

                    What's Jade's visual acuity? Interestingly enough my cousin actually does the mobility training you spoke of for a living! She has some really good tips too. And she often says how much harder it is to have an acquired visual loss in adulthood as opposed to being born with vision loss.

                    I don't know which state you are in, but here in Melbourne there is a doc who is very knowledgable about nystagmus (the Australian expert apparently) and actually does a surgery which was was developed by a doctor in the US. We are in the process of determining if our daughter would be a candidate. It's not a cure, but most people gain a line on the eye chart, and also have other visual improvements ie. faster recognition of faces in a crowd etc. If you are interested I can PM you more info.

                    I completely agree about not 'cotton wooling' our kids. I expect exactly the same things from my 2 year old as her sister (within reason). So far, she can do everything her sister could at that age, and then some. I suspect having a big sister to keep up with probably helps though.

                    When I think back to when she was tiny, and the fears I had about her future, so far I have been nothing but pleasantly surprised! She has been the one teaching me so much I think!

                    I do worry about her schooling, but stories like yours give me a lot of reassurance. One thing is for sure, I am definitely prepared to be her advocate as much as necessary, whilst hopefully still teaching her to advocate for herself as well.

                    It was lovely to hear your story, thanks so much for taking the time to share it!


                    • #11
                      I would love more info about the nystagmus surgery, thanks. We are in NSW but will travel! The Nystagmus, I think bothers Jade the most because she cant control the movement and it's obvious.. My saddest memory of her younger years was when she was about 3 and she was standing in front of the full length mirror, right up close, and she said "Mummy, why won't my eyes stop moving". It broke my heart, I think it's the first time that I allowed myself to really cry about her vision loss...

                      Jades visual acuity is 3/60 in her left eye and light perception only in her right.

                      I started putting Jade in occassional care a couple of hrs a week when she was 2 as Jade was our first child and I wanted her to get used to other children, I have never been so anxious in my life! I was always early to pick her up... As usual, she was fine!

                      It makes me smile to think back when Jade was your daughters age! When Jade was 2 we used to go to playgroup at Vision Australia in their sensory playroom, it was so much fun!

                      Jade went to a reverse integrated pre-school in Newcastle called the Tingara Centre, run by the Royal Institute for Deaf and Blind Children. When the pre-school was first suggested to me, I was totally opposed to the idea. I wanted Jade to go to "normal pre-school". My husband and I went and had a look and immediatley fell in love with it! They had 2 rooms, 1 room has Vision Impaired & Non Vision Impaired and the other room has Hearing Impaired and Non Hearing Impaired kids. The kids without sensory disabilities outweighed the kids with and they acted as role models (not the words I'm thinking of) for the kids with vision or hearing loss. The student/teacher ratio was about 3-4 students to a teacher who has masters in special ed. It was amazing and a fantastic foundation to begin her schooling. I sent my younger daughter who does not have a vision impairment their too and she loved it!


                      • #12
                        Hi loukev,

                        I'm so sorry that I only just saw your reply now, 3 months late!

                        I can't send you a private message as you only have 3 posts.

                        So I'll just put the details here. I hope that's okay with the mods.

                        Dr Lional Kowal (kov-el)
                        Level 3
                        182 Victoria Parade
                        East Melbourne 3002
                        Ph: 03 9671 3244

                        He is the Australian expert on all things nystagmus.

                        If he suggests that your DD is a candidate for surgery, he will send her for eye movement recordings with Dr Larry Abel, and they will go from there.

                        We tried to do the eye movement recordings about a year ago, but DD was just too young to cooperate. I'm hoping we can give it another go soon.

                        Please let me know if I can help at all.

                        Best wishes


                        • #13
                          Hi Ladies,
                          So glad to have come across this post.
                          my son (4mths) has just been diagnosed with ONH and Nystgmus.
                          We are just getting back to normal this week and are now looking around for options playgropups etc.
                          Our little man is amazing, and it struck a chord when you talked about your anxietites, as the future for him is all I can think about.
                          There seems to a lot of bogus talk of stem cell operations in china and the like, thats pretty sad
                          What an insiration your tories are, I am sure Rowan will go on to amaze his dad and I (and scare us silly along the way

                          We have yet to go through the scans and tests to exactify his levels of sight etc, that will start next month. Luckily we have a great paediatrician , who seem very positive.

                          Great to hear about the specialist in Melbourne (we are in Sydney) def keeping in mind for the future.

                          Hope to speak soon


                          • #14
                            Hi ladies just wondering if anyone is active on this page ?