BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUS
Posted by hispotpie on 3/22/2007 at 3:41 PM
I am a 23 year old, recently graduated, married and mother of 2. I have a son who is 27 months and a newborn. My 27 month old(2 years) Dylan, has Bilateral Optic-Nerve Hypoplasia and Nystagmus. He was diagnosed at 8 months. He is legally blind in both eyes. Dylan has been to the Iowa City University Hospital for his checkups with the Opthmalogist(sp) and Endocrinologist. The Endocrine doctor told us everything else was pretty much normal for now.
I see the differences between raising Dylan and raising my newborn who is almost 2 months now, all ready. Dylan used to wake up in the middle of the night and cry like he had just seen something really scary, or woken up from a scary dream, whatever the case, these episodes haven't stopped. There are fewer ones, but still manages to wake up in the middle of the night and cry sometimes. Actually lately he has been waking up and talking to himself and laughing to himself. He'll stay up for some odd hours too. I used to get him whenever he started to cry in the middle of the night, and stay up with him until he went back to sleep, which sometimes would take up to 6 hours, pretty much all night. I stopped doing this afterawhile, actually sometime this past fall I stopped. I would just let him cry. I didn't want him to think that it was time to play anymore from me picking him up in the middle of the night. Because Dylan is blind, I felt that even if he sleeps for a couple hours at night, a couple hours could mean all night to him. So I stopped. I feel really bad for doing that, but I felt that was the only way to get him to understand that it was time to sleep. After awhile he basically stopped crying in the middle of the night, or if he does, he cries for like 5 minutes, but really when he gets up he pretty much talks and laughs to himself. What do I do about this? Will he ever stop? Is it ok to let him cry like that in the middle of the night and/or pick him up?
Another thing is his eating habits, he won't feed himself. He used to be able to pick food up and put it in his mouth, last year. But then he came home to my Mom's for the summer and I guess that's when he stopped. He still drinks from a bottle too. Any advice?
He can get up and walk around a little bit. He walks well holding onto a hand or finger.
He doesn't communicate that well, but will repeat sounds(has been doing that for a year or so) and certain words. I'm not sure if he knows what those words mean. He claps every time you say, "Yea!!" and "Good job!!" with a big 'ol smile on his face. He'll hold up his hand when you say, "High-five!!". He'll put his forehead down and foreward when you say, "Kiss!! Can I have a kiss?!" and when you ask him where your nose, chin and cheeks are he will reach his hand up to your face and find them.
Dylan is a very smart boy. I have been told he is spoiled, like with his eating habits and doing things for him. It's hard though because he'll get very upset if you continue to force him to put his hands somewhere, or make him do other things he doesn't want to do. Again, any advice?
Also, Dylan has always had an issue around other kids/babies especially. He would start to cry when he heard them talk or make the slightest noise. Whenever a friend would bring her baby into our home, without evening making a sound, as soon as the baby was in the room, Dylan would start to cry and whine. Now, I have a newborn and it has been very difficult because Dylan does the same thing with him. I can't even say his name or, "brother" because Dylan knows and starts to whine. I can't really keep them in the same room together because Dylan starts to whine, cry and scream around the baby. ANY ADVICE?? ANYONE EXPERIENCE THIS??
Thank you for taking the time to read my story. If anyone needs advice or has advice of their own, please feel free to ask.
There are currently 22 replies
Re: BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Icuqt2 on 9/18/2016 at 4:23 PM
I have a 15 yr old with Bilateral optic nerve Hypoplasia , nystagmus in both eyes, strabismus both eyes, no optic chrism and septo optic DYSPLASIA His vision is 1-2/400 and yet his school says he's not blind just a lazy autistic child and refuses to modify anything for him. The only service he gets is 15 minutes of visual services for the TVI to consult with his teacher once a month. I just love our educational system. I live in California. My advice is come out of the gate fighting for your children and don't stop no matter how hard they try to wear you down!!
Re: BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by amanda22273 on 8/23/2015 at 11:04 PM
My daughter will be 7 in October and has had problems since 6 months old, she is legally blind but developing as normal as most children, she has developed sezuires they said resulting from her vision and optic nerve problems, nobody knows she is legally blind unless I tell them, so everyone there is great hope, I just would like to know if anyone else's child has experienced sezuires. My daughter is going into the first grade, right where she is supposed to be in a regular class she gets taught braille as well, I will be happy to answer any questions anyone has.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by sjones2010 on 1/16/2012 at 6:00 PM
I am so glad I found this page! I have been researching nonstop since I've heard the news. I am a 24 year old first time mother. My son is 16 months and was diagnosed with septo optic dysplasia at 6 months. Until recently his endocrinologist informed me he doesn't have the typical findings for SOD, but rather optic nerve hypoplasia and a nystagmus of one eye. He's not blind, he seems to see fairly well actually. He sees his eye dr about every 6 months untill we can find out just how much he can see. He doesn't have any hormone problems as of now. I had some questions for people who have dealt with this for longer. Does ONH seem to affect intelligence? My son repeats alot of words, some of which I'm not sure if he knows what they are. But he can point things out and tell you what they are. But his motor skills seem to be lacking. He also seems to have some social problems, he acts almost scared of ppl he doesn't know even other toddlers if they get too close. I'd enjoy hearing others experiences with this as alot of them I've read so far do seem to fit my son also!
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by shekinah on 2/6/2010 at 8:17 PM
hell, my name is Esther and I have a granddaughter who is 5 yrs old and has ONH she does very well. she is learning braille loves to read and think she can read to you ..she is very bright and friendly .she is a very picky eater ..which I'm concerned she only eats certain things no vegetables except celery ..we try the one bite rule and ranch dressing because she loves that on everything .. once she eats something for a while then she want eat it again.. thank God for Fruitables which is a vegetabe fruit juice.. she will drink that .. but i'm concerned that she does not eat a well balance diet.. she is getting a plump..do you all have trouble with your children eating ?.. she is very sensitive but loveable , loves to sing and remembers everything from 2yrs on... very old spirit .. and vocal ..
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by braydensmommy on 1/30/2010 at 12:40 PM
vlwalden...high five to you!!! my son is 28 months and was diagnosed bilateral ONH when he was 6 months old. i never allowed this to stop him from doing what he was capable of doing. i understood that sometimes things will take a little longer but if we work on things he will pull together and do what he is capable of doing.i have never pushed him to the point i felt like i was forcing thigns on him but i have introduced so many different things to my son and he is now closer on track to the average 28month old. he has a few delays such as eating with a fork and spoon, or even running without looking a little wobbly. but he is an amazing child and learning so much about this condition has helped me help others. i was told my son wouldnt walk or talk until he was 3-ish. he walked at 13 months and at 2 yrs old can say his abc's and count to 10. he attends a school for the visual impaired. www.blindkids.org they have helped so much as well. even at 2 yrs old they teach the kids how to track braille. to just get the feeling down of the direction of the bumps. i know i dont know everything about the condition but i have to say what i do in my free time is research. if i dont do it for my child, who will? my son is amazing and it sounds like you are as well. you have come a long way and have gone around all the bumps in the road you come across. when a parent tells me that their child only has light perception and i tell them to put them in front of a mirror. they tell me im crazy. but i personally think the more people learn to utilize what they have the more they will pull together :)
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by vlwalden on 1/23/2010 at 1:48 AM
Greetings. I am writing for parents who happen upon these messages. I am 31 years old and have lived with ONH, well, since birth. My acuity in both eyes (corrected) is 20/200; I have nystagmus in both eyes.
In 1978, doctors were making all sorts of predictions to parents of children with ONH. My mother was told that I would be totally blind, that I would be about 2.5 feet tall fully grown and that I should never have children.
I am five feet tall, legally bind, and perfectly capable of both having and raising children, although I don't know if I will go that rout or not.
I didn't grow much at all during my first 3 years. I was born weighing 7 lbs. 8 oz. At 12 months, I weighed 10 or 11 pounds, and stayed that way for a long time. I threw up after nearly every meal until I was about 3. I took a long time to evidence signs of light perception and a very long time to track objects. (I am told that the first object I tracked was a mirror). Since I was so small, I sat up, stood up, crawled and walked late. I can remember learning to walk by holding onto furniture. I believe I would have learned to walk a bit earlier had I been given a cane. I potty trained late too--my older brother finally got the idea into my head by pointing to the potty chair and telling me, "just sit on the thing and go!"
Things did get easier, however. I eventually grew, held my food down, walked, talked (and wouldn't stop!). I was in the "slower" track in school all my life until a teacher identified me as a potential honor student in the tenth grade. I made it to community college, a four year school and then I earned a Masters degree. All good news.
However--because I had some vision and could use it, I was never given the opportunity to learn cane travel, Braille and other blindness-related skills. This means I have spent my whole life hunched over books, squinting, looking at my feet while walking, being unsure about crossing streets, bumping into things, tripping up and down stairs etc.
Just because I "could" see to do things did not mean I "should" have been forced to accomplish everything visually. At 31, it is finally dawning on me that I need to develop a whole new set of skills, and am taking up the task. Although ONH is described as a stable condition, it must be remembered that optic nerve fibers deteriorate with age in everyone. People with ONH have fewer to begin with. If I am to retain my independence as I age, it is crucial that I have blindness related skills.
Also, although I eventually found educational opportunity, I wish my early academic experiences would have been better. I was a gifted child. No one identified me as such until 10th grade. At that point, it was impossible for me to switch to advanced science or math--I was too far behind. Why was I not identified?
First, I was never given the opportunity to read and write without pain and embarrassment; I was not taught Braille. Instead, in the sixth grade, a teacher for the visually impaired half-heartedly showed me some magnifiers--they were awkward, and I found them useless.
Second, every one of the standardized tests I took until the 11th grade was given to me in standard print and I had no help filling in those wretched bubble sheets. I don't know why this happened, except to say that education for the blind in my state was terrible when I was in school (I found out later that totally blind children were not being taught Braille either, but were given "speak and spells"--and teachers were calling this "reading.")
While I am perfectly capable of acquiring the skills I know will allow me to compete on a truly equal basis with my sighted peers, and I am eager to do so, I find it a bit sad that I am only now finding out about such skills. But enough of sadness--onward, upward and toward bigger things ahead!
I hope my cautionary tale might do something to inspire parents to have appropriately high expectations for their visually impaired children and to advocate like heck to get their children access to Braille, cane travel instruction and other blindness-related skills--or at least large print standardized tests!
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Watson03 on 10/30/2009 at 10:44 PM
I have a 5 month old baby who was diagnosed with ONH and SOD at about 3 months. My husband and I were so caught off guard and devastated when we were given the news. Now that the denial and shock has worn off I am starting to deal with things a little better. Reading everyone's responses has given me suck peace. i feel like Im not doing things incorrectly since it seems to be the same types of things everyone else is dealing with. Just recently he has started waking frequently and lets out these aweful screams, it breaks my heart, i worry he is in pain or something I dont know how to fix. what should i do to help ease his discomfort at night? Im sleeping on the couch just to offer more comfort to him. Im a working mother and need my sleep too! I just want to do what is best for my sweet boy. any advice/sucess stories would be greatly appreciated!
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Haylee09 on 10/13/2009 at 5:48 PM
Hi.. My name is Joy I am 19 yrs old and I have a daughter that is 5 months and 13 days old. I too have just found out that my daughter has optic nerve hypoplasia and nystagmus. They told me she would be visually impaired for the rest of her life and that she was born like that. I am so confused by all this I mean i just got the news and then had to take my baby for an mri which i hated to see her like that she looked so frail and sick. I know in my heart she can't see me at all when i speak she lifts her hands to my face and finds the place that my voice is coming from. I try everything to see if she could follow something i put big toys in front of her eyes and move it real slow back and forth and still she dont follow, even my mother has tried i really dont want her to have to face life and people like this cause a lot of people will make fun of her and i know it cause there is ignorant people in this world and that just wouldn't be fair to her. she too wakes up cryin and screaming in the middle of the night at like 3 or 5 in the night. I have a little brother who is deaf which is how i know that she will have people snicker and point at her cause they did it to my little brother all the time and i would snap i hate people that are like that. but anyways anyone that could give me any insight or any advice i would really appreciate it. thank you
concerened and worried mom
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by darts debbie on 10/7/2009 at 5:05 PM
Hi my name is Debbie I live in London England. My grandson Frankie is 16months and was born with Bilateral optic nerve hypoplasia. He too wakes in the night and wants to play. He is getting better at eating chunky food but its a slow process. Frankie is not walking yet but im sure it wont be long before he does. Im glad I found this site its good to read other peoples advice. As you can imagine I was devastated when we were told of Frankies condition and have found it hard to find groups where I live.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by ladycat45 on 1/26/2009 at 12:06 PM
My 9 month old also has bilateral optic nerve hypoplasia with nystagmus. Feel free to email or im me and ask any questions at email@example.com. We also have a myspace www.myspace.com/erinmerrill. We have been blessed to have great doctors and my little guy has gone from hardly any light perception to seeing big objects held in front of his face. Me and my husband are excited about the new challenges that lay ahead of our family. With prayer anything is possible. We also take herbal supplements that we believe has helped.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by mshaw on 1/20/2009 at 1:39 AM
My 6 month old grandson Riley has ONH & Nystagmus. Has seen a Pediatric Neurologist, a Pediatric Ophthalmologist and had an MRI. We don’t know the results of the MRI yet, but the Neurologist does not anticipate any bad results.
I was very frustrated with the Ophthalmologist because he did a very quick & basic eye exam and gave us almost no information, except that Riley had ONH & told us that his vision was pretty good and that he would never even have to wear glasses.
He did not mention his nystagmus, any additional tests, nor did he tell us what he thought his vision was.
He did not mention Early Interventions such as visual or occupational therapy or referrals to other doctors/specialists like pediatric Endocrinologist, etc. for additional tests.
He just told us to see him again in 6 months and everything should be fine.
I left there with more questions than I arrived with.
I was especially frustrated & scared, when I started researching ONH & found out all the specifics, particularly the fact that he could potentially have SOD also.
I have questions and I thought some of you might have the answers:
Does Optic nerve Hypoplasia always go along with Nystagmus?
What percentage of children have nystagmus with ONH?
At what age can a doctor test a baby's vision with accuracy?
Will we not know exactly what he sees until he is old enough to tell us & how old will that be?
Feel free to give me advice. thanks so much.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by messiah1 on 10/15/2008 at 11:51 AM
My name is Phebi and I have a 5 year old little girl who has ONH. I gave birth to [Mi'Kaiya] at the tender age of 19. She was diagnosed with ONH at 3 months old. In the beginning Kaiya cried a lot, but now she is potty trained and going to the Indiana school for the blind and visually impared. She is a wonderful child and I love her enormously. I get her things like play-doh so she can use her hands and moter skills. She also has an imaginary friend named grindin. She has a beautiful voice and she can make beats on her chest and sing her favorite songs. She is into music a lot. I buy her CD's to have an array of music in her. For anyone with a child that hasa ONH don't be discouraged. You child is chosen and blessed by the best. LOVE HER/HIM.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by bdscds2 on 5/15/2008 at 11:55 AM
Hi my name is Samantha and I have two children and my oldest son has optic nerve hypoplasia with bilateral nystagmus. My son was diagnosed around 3 months with this. He would get up in the middle of the night too and cry. I usually had to rock him back to sleep and comfort him too. Now that he is almost four years old he sleeps in his own bed and every once in awhile cries and comes to me. He was delayed in his crawling, walking , and his speech. I went through these amazing services called Delta Gamma Center. They provided me with a therapist that is trained for special vision impairments. they also provided a speech therapist too. My son now is in an Early Childhood school and is doing very well. He goes once a year to get his eyes checked. The last time we went his estimated vision was 20/700. He gets along well with his brother and they are only a year apart. He is a very normal kid and does everything any other kid does. They say he won't beable to drive and will have to accomodate in school with reading.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Dark_Harpanger on 4/22/2008 at 1:15 PM
Hi, I'm almost 18 years old, and I have Bilateral Optic-Nerve Hypoplasia and Nystagmus. I was diagnosed at a few months old. I'm not completly blind, but my vision is over 400, and I'll never be able to drive a car (which really sucks). I was born completly blind due to medication my mother was given when she was pregnant. I was completly blind until I was 18 months old, then I slowly began to gain vision. I'll never have normal vision, I can only stay the same or get worse.
From what my mother told me, it was difficult for me to sleep at night, and I had problems with drinking from a bottle and some other types of food. I didn't have any problems with anything else, I was pretty much an ordinary kid with bad vision.
I had, and still have, special modifications and requirements for school, but nothing too serious. Just not doing too much reading or too many math problems, I get to leave class 5 minutes early and I have an escort (which is my boyfriend) to each class, and for tests, I get read to, and the answers are narrowed down so I don't strain myself.
Otherwise, I'm treated like a normal kid. I go to a public school, I have good friends, I'm going to college, I have a wonderful boyfriend who loves me for who I am and doesn't judge me by my sight, and we might be having a baby.
I don't know if this helped any of you, I thought I'd just share my life's problem with you. If you have any comments or questions, just email me at "firstname.lastname@example.org" I'll be more than happy to answer any of your questions or just talk.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by rmorse on 3/19/2008 at 2:51 PM
Check into stemcell research and go to stemcellschina...they are doing amazing work with ONH
Good luck and hang in there :)
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by stephanie7900 on 1/2/2008 at 3:42 PM
Hi my name is Stephanie. I am 28 and I have two children, an 8 year old daughter and a 4 month old son, Jack. Jack was formally diagnosed with bilaterl optic nerve hypoplasia today. He is scheduled for an MRI on January 25th. I am trying to do as much research as I can on this. He does not focus or track, I don't think he can see me at all. He does not sleep well either, I don't know if this is linked.
I don't know what to hope for or plan for. I have been told there is no cure but it won't get worse either.
Any advice from someonw who has been dealing with this? How can I help him? He doesn't hold his head up well yet and won't lay on his stomach. He is reportedly "developmentally delayed" according to our pediatrician. He was born on 8/31/07 and we new something was wrong withint the first few weeks and yet we were not able to get a doctor's help until November when we were told his optic nerves were fine. We were not told until today by a different ophlamologist that his optic nerves are "severly" underdeveloped. He would give no future expectations.
Please share your stories or words of wisdom and encouragement, or even discouragement, I am also a realist.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by ravensnonni on 8/13/2007 at 4:58 PM
Hi, I'm new to the boards, but I have a granddaughter that turned 2 last week and has some of the same behaviors. She is amazingly verbal and walks well alone, but still has issues with certain tactile stimuli. She still only eats baby food from the jar because she is uncomfortable with food with "texture". She spits out anything remotely chunky, except very small bits of pasta. She also has some problems with touching certain types of items, she will not go near a "koosh" ball, one of those balls with lots of "tentacles", she hates to touch wicker furniture or the fireplace bricks and will not use her beginner cane because of how the handle feels to her.
She actually started responding to potty training a couple of months ago, but quickly lost interest in it and we haven't pushed it. I tried to watch for signs that she needed to "go", but she seems to always "go" when she is eating and I don't want to stop her eating just to put her on the potty chair. Has anyone ever been succesful in changing a child's biological schedule?
As far as sleeping, she sleeps better for her Mom at home than she does at Grandma's, but Mom works 3-11 at a hospital, so she is used to going to bed at midnight and sleeping till 9 in the morning. Unfortunately, I don't have that schedule, so I don't get a lot of sleep when she is with us. I do watch a lot of late movies, though!
Anyway, I'm glad I found this forum, I had never heard of ONH before Raven was born and now I can't get enough information. I feel very blessed to be able to see others working through problems and also being able to find information on what I can look forward to.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by nicholetrue on 5/5/2007 at 12:57 AM
I don't know if I am any help or not, but I have a daughter her has ONH as well. Sh eis 3.5, been home from Guatemala since Sept '06. I am on a few groups for ONH andSOD and for parenting blind children. And honestly the food and sleeping thing sounds VERY much like and ONH/SOD child. You would be amazed at how many people mention it. If you would like you can join this group yourself that is solely for parents of children with SOD or ONH and people with Sod or ONH. It is beyond helpful, here is the address to join if you would like http://groups.google.com/group/sod-l if not you are welcome to email me as well at email@example.com
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Aiko on 4/14/2007 at 5:13 PM
Hi how are you doing?
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by jsb on 3/29/2007 at 5:20 PM
I would love to talk to you. You have just discribed my son to the T. I felt like I could have wrote that about 9 months ago myself, right down to the baby. If you would like to talk I have some things that have worked for us and some that we are still working on. My e-mail is firstname.lastname@example.org or my phone # is 970-824-2067 if you would like to talk some time. I am just so amazed how alike your story is with my son. My son is 32 months old (almost 3).
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by janitorcap on 3/28/2007 at 12:53 PM
Yes, all these things sound "normal". But then again, our children are very special,...aren't they? :-). My daughter is 21 months old and has Bilateral optic Nerve Aplasia (no optic nerves). She also is totally blind. At times, she stays up for a few hours a night and "plays" in her crib. We leave her be and just try to keep same sleep hours every night. Get her in by 9pm (or so) and get her up by 7-8am. She also has "issues" with people outside of Mom, Dad, and brother. She can tolerate some, but reacts by crying, etc. to others. her walking is like your sons; likes to hold on to us or furniture...she also uses a walker to get around but most of all, like to roll around on her back. Each blind child seems to have their own special "abilities", but in the long run, they all seem to get where they need to go.
Re:BILATERAL OPTIC-NERVE HYPOPLASIA & NYSTAGMUSPosted by Aiko on 3/26/2007 at 4:40 PM
Hello I just have a moment and i promise to get back to you on Thursday 3/29/07 Please hang in there it gets better we had and still have most of these same things our grand daughter was born the same way I have to leave right now to pick her up But i will talk to you on thursday my E Mail at work is email@example.com
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