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optic nerve hypoplasia

I was just wondering if there was anyone that would like to talk. My son will be 5 mo. on the 16 of this month. He was diagnosed with optic nerve hypoplasia about a month and a half ago, and now has to get an MRI. If there is anyone with a child who has Nystagmus or ONH, or is visually impared feel free to answer back.


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Re:optic nerve hypoplasia



Hi by going and reading everybodys post i think my daughter has this....I notice when she just turned 1 she would be clumsy always running in to the wall.I made her a doctor appointment so they sent me to eye care and said she has a small cross optic nerve and she is blind in her left i....Shes 8 now and they still have not diagnosed her with the condition i just want answers the only thing they do is prescribe her with safety glasses to protect her good eye..And she also has high frequency hearing loss in both ear and has to wear hearing aids at all time....can someone help me


Re:optic nerve hypoplasia



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Re:optic nerve hypoplasia



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Re:optic nerve hypoplasia



Hi,
My name is Jessie. My son was born with a condition called Gastroschesis, and was in the NICU for 3 months. At 3 months old he was diagnosed with ONH. He is now 4 years old. He has been able to regain alot of his vision-he can reconize letters and is starting to read. We are also teaching him Braile. I am posting this because I know there are alot of parents out there who have questions. Or just are terrified and dont know what to do or who to turn to. I had no other parent to turn to when my son was first diagnosed, and I would like to help others. If you need someone to talk to, have questions, etc. Please email me
bergjessie@ymail.com.
Jessie


Re:optic nerve hypoplasia



Please dont deny your child anythng to drink, and report the person that told u she could go 72 hrs without drinking. Could you go 72 hrs? Let her drink from the bottle. Offer the cup first and if she doesnt want it give her the bottle. Transistion slowly. Give her sippy cups, cups with straws etc.. I dont know how visual ur daughter is, but it may be difficult for her to drink from a cup if she cant see.


Re:optic nerve hypoplasia



Hi. I am a 33 year old mom of a 4 yeard old daughter. Her name is Kylee and she has Optic Nerve Hypoplasia. She is still on the bottle but her occupational therapist told me I needed to put her on a cup. She told me to do this cold turkey and she could go 72 hours without anything to drink. So far she has went 17 hours.... and still wont have anything to do with the cup. Does anyone have any feedback to this?


Re:optic nerve hypoplasia



Hi, My name is nicole, I'm 19, And I have ONH in my left eye and have very little vision. My right eye is perfectly fine except for some slight astigmatism. When i was a child, I didn't have any real issues. I did have speech problems, My mother would talk to me and i would say some nonsense word and keep repeating it like I had my own language Lol. So i had therapy until 5. And i would bang my head alot against my crib for whatever reason.


Re:optic nerve hypoplasia



hi, my name is katie. I am 20 years old. have optic nerve hypoplasia in my left eye.I was born this way due to my mother doing heavy drugs when she was pregnant with me. I just want to tell all of you parents of children that have this burden that its going to be ok..i have it easy seeing as though I am only blind in one eye, but it still has been a rough go for me. Coming from a person who has loved this way, all your baby wants is love. Dont feel sorry for us..just do your best for us. Thank you for your time. =)


Re:optic nerve hypoplasia



Hi,

Thank you all for sharing about your child. I have my first son Babu, 1 year now. He has problems during birth. He was underweight-ed. And he is having development delay now. He has went through MRI scanning while he was around 8 month old. His brain has not developed as expected.
Just this week I came to know my son has ONH. Though doctors didnt clearly mentioned it. But said us that don't ever expect that he will see normally. I and my wife is broken now. But going through all of you, we are getting back some hope. And only god knows how our Babu will be doing in future.
We live in India (Eastern side). I am not sure about any good doctors, hospitals, from where we can get some good suggestions.
All the good wishes to all of your children and Thank you very much again for posting here.
--
hkdas


Re:optic nerve hypoplasia



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Re:optic nerve hypoplasia



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Re:optic nerve hypoplasia



Wow!!!! I cannot believe how many people have children with ONH. My daughter Raelynn was diagnosed with ONH when she was four months old, I was devastated because the first doctor we went to told us that she was completely blind and to just accept it. My husband and I were in disbelief so we went to the dean Mcgee Eye institute in Oklahoma city and we found an amazing doctor who diagnosed her with bilateral optic nerve hypoplasia she also has a stigmatism and is near and far sighted. My daughter is now thirteen months she reacts to toys and our faces right in front of her she is doveloping great she crawls after people, she is so curious and is not scared of anything. She has a little trouble with eating. We pray every day that her vision will continue to get better, so far our prayers have been answered. We just recently went to the doctor and he said that her vision is improving. We are thankfull she has no other conditions, she is a blessing.


Re:optic nerve hypoplasia



I have on. I get around independently just fine. When I was a kid, I had orientation and mobility instructure he taught me how to use a cane, cross streets, take the bus, and to get around without seeing. My advice to all of the mothers out there whose babies have on, get a really knowledgeable/caring o, and m teacher for them, him/her will teach them how to get around on public transportation without seeing. I'll try to get my mother to sign up for this maybe the mothers can have a mother's support group on this message board.


Re:optic nerve hypoplasia



I have a 16 year old daughter who was diagnosed with ONH in her right eye at 10 months. We tried patching to save any sight she might have had, but that was a disaster. We stopped the patching and was told by the Dr. that she would fully lose any sight in that eye. She is also nearsighted in her good eye, but wears glasses to correct her vision and also for protection. She had no other problems growing up with ONH besides the wandering eye. The Dr. we took her to for checkups did not want to perform the surgery that would keep her eye from wandering until she was a teenager and fully grown. She said there was a 50/50 chance that the surgery would correct the problem and there was no telling how long it would work. My daughter had the surgery in 2008, but over the past few months has noticed her eye wandering again. She has asked to have the surgery again because many people ask her what is wrong with her eye. She has her license and drives, and has been a competitive dancer for 13 years.
Although, hearbroken years ago and not wanting to believe that something was wrong with my baby, ONH really has not been a problem for my daughter. She doesn't like the fact that she is different and she doesn't like it when people ask her what is wrong with her. But she has a lot to be thankful for. I cannot begin to understand what other families are going through, since my daughter's condition only affected one eye and is not as life challenging as it could have been. Hopefully, though I have given hope to other families, in similar situations as mine, that life will be good for your little one and love him/her like there is no tomorrow!


Re:optic nerve hypoplasia



Hi Everyone, My daughter is 4.5 months old and was diagnosed with ONH 2 months ago. There's a really helpful website that will answer many of your questions. Go to www.magicfoundation.org. In the left-hand column you will see Septo Optic Dysplasia/Optic Nerve Hypoplasia. Click on this and you will be able to read more about these conditions. Also, the Magic Foundation is dedicated to helping families of children with growth issues. Not everyone that has ONH has growth problems. This site will put you in touch with other families/parents who have children with ONH and growth issues. Always great to have more information and resources.


Re:optic nerve hypoplasia



Hello. My name is Veronica and Im new to this site. I have a 13yr old that has ONH. Had it since birth. Alyssa is in the 8th grade. I have alot of trouble with schools that doesnt want to follow her IEP. This isnt nothing new. Been happening for years. Alyssa is also gifted. Currently she is in all honors classes. She is in regular classes. Alyssa has already loss vision in her left eye and has sever reduction in her right eye.My opinion to all mothers is do your reseach. If you dont get the answers you want get another opinion. Keep going! As old as my daughter is Im still trying to find the right answers. I know some may not agree with my decision, but I have decided to put my daughter into a school for the blind. She will be around others with vision problems and learn to adapt on her own. I reside in Memphis TN temporarily and I was wondering if there is anyone in the area with children with ONH. Maybe even a support group???


Re:optic nerve hypoplasia



lucky- i can understand your fear as far as the abusive relationship. i was in one myself. i blamed myself up and down and in and out. and the truth is that it was nothing i could have done to change the fact my son would have ONH. they very much believe that it is environmental but they are still doing so much research on the condition. my son also has SOD but they are saying the missing septum pellucidum has no effect on a developmental delay. that part still confuses me a little but im not a doctor :) regardless, i still work with my son as much as i can. i allow him to do the best he can and work with the potential he has. there are so many different things that can affect your child with ONH so it is hard to say where each child will be. just be a mommy, do what you can for your little one, and let the doctors and the services help you out. Dr. Mark Borchert is in Los Angeles, Ca and is the main research provider on ONH. there is a survey on their website that helps them gain info on ONH during the mothers pregnancy. also, I am on facebook and I do have a page on there for ONH support. look me up if youd like, the more of us that connect with each other and voice our concerns, the more knowledge we will all gain :) dallasuhhsaidyes@aol.com


Re:optic nerve hypoplasia



Hello, my name is Arlie and I am 41 years old with optic nerve hypoplasia. I don't have all the answers but I can tell you this if you don't know by now. Give the child some room to make all the mistakes needed to get the job done. "short of injury," well major injury anyway.
I have learned one thing over the years, and that is that I am a really good faker. That is to say I've been doing things on my own for so long that I have learned to do things without aid or help and that is very bad. because now when I really need help no one believes that I can't do what I am trying to do. In short they think it's an excuse i'm using to get out of doing the task. "Not true!"
So you can help by just giving room but letting the child know that he should never be ashamed of who he is. And yes the other children will make fun. It's cruel but it cant be helped. He needs to learn to defend himself. So give advise but whatever you do don't coddle. Well coddle a little, after you're his Mother.I hope this helps you in what you are trying to do. It can be very hard and trying at times, but with a lot of patience, a little love, and compassion you'll get through just fine. But more importantly. "So will your child!" Please feel free to contact me at my E-mail adress if you need to talk. arlieray@hotmail.com


Re:optic nerve hypoplasia



my 6 mo old daughter was just diagnosed with optic nerve hypoplasia about 2 days ago... i have to take her to LeBohner in memphis tuesday and when they told me it was possible that she may have septo-optic dysplaysia all i could think was how i had no idea what it was. i was so scared.. unfortuneately the relationship i was in when i was pregnant was abusive, so i thought it would be because of trauma, but her doctor said it wasnt likely. i found out it was treatable either way, so im relieved, but its just not something you like hearing.


Re:optic nerve hypoplasia



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Re:optic nerve hypoplasia



MRI's are used to look at the brain. ONH affects a few things in your brain...the pituitary, the septum pellucidum, and the corpus callosum (not sure if i spelled it right). in my sons case, his septum pellucidum is missing and the corpus callosum is thin. they are both in the center of the brain and from what i found basically work as transmitters for the brain. but here are also things that say a missing septum pellucidum will not affect your child developmentally at all. so im not exactly sure. the pituitary helps our body produce hormones that are responsibile for allowing us to grow properly. there are a fair number of kids with ONH that have to have growth hormone shots because the pituitary is not growing properly. this is where the endocrinologist comes in. they can see the pitutary on the MRI and the endocrinologist can follow through bloodwork what the cortisol levels are putting out. originally they said that my son has ONH bilateral (in both eyes) has nystagmus (the shifting of the eyes) and strabismus (cross eyed). i was told that they didnt think my son could see anything originally. he looked down, would swipe at things on the ground to find them and had a delay in many things. my son is now 28 months and can run in circles without bumping into things as long as his brain and eyes are working together. when hes not concentrating he will run straight into walls but it doesnt stop him. he can find a cherrio on the ground and pick it up with two fingers. all the doctors told me before that wouldnt happen...i worked for it to happen. i personally believe with this condition as with ANY developmental condition that if you try hard enough and work with your child frequently that they are capable of so much more then you may even believe. i understand that this condition is devistating. i am a single parent and doing this on my own with the support of friends and family. but i look at it as i have a special child that needs me. and by researching so much, maybe i can help others too. things have turned around from when my son was first diagnosed as a baby. he still has delays and will always have blocks in the road to go around but if you think about it, who doesnt? so weather your child is completely blind, or partially visually impaired, they need you. they need you to be strong to help them. without us how will they learn? i encourage everyone to look into confrences and workshops to be educated as much as you can with the condition. i promise, it will help you understand it and deal with it better. also, the hadley school of blind in IL offers courses that can be mailed to you. they are no charge to parents with visually impaired children. you can learn the anatomy of the eye as well as how to just deal with visual impairments on a day to day basis. you can even learn braille :) . the NAPVI website also has a bit of info on upcoming confrences. also, there is something called angelflights that will help with airfaire if needed to go to a doctor appointment that is medically necessary. utilize all the help you can get to learn what this is really about. that is what its there for. anyone that lives in california or can get out to california should def. go see Dr. Mark Borchert. he is doing so much research on ONH and SOD and may also help you understand it a little more. if anyone needs to talk, yell, or ask any questions i will do my best to be there. please feel free to email me anytime. dallasuhhsaidyes@aol.com


Re:optic nerve hypoplasia



JulieBee,
Hi, my name is Elaina, and I have a 2 year old daughter that was diagnosed with ONH at 6 months. I don't know all of your questions, but I can help you with the question about why ONH and MRIs are connected with one another. It's because some sort of brain damage is commonly another affect with ONH. I was told by all of my daughter's doctors, that Most kids with ONH, their sight can vary from poor to almost as good as our vision would be. And all kids with ONH are different. But then it also varies with the brain. A lot of kids have brain damage but some do not. My daughter had an MRI done right before we found out that she had ONH, and that is how they were able to tell, because they could see how small her optic nerves were. But, you should mention it to your doctor, because it is very common for them to have it. I'm sorry for giving you bad news! I know how it feels. I think that I was in complete denial about everything when I found out. I actually yelled at her first doctor when he told me that she was blind! I didn't want to believe it, and I don't think that I really believed that she was blind. I love her so much, and she is soo smart, and is really happy, but it still is hard somedays, when I see her cry when she drops something, and she can't find it, or when she drops something, and her sister takes it, and she doesn't even know! It's still hard, and I just pray, that one day, their will be a cure of some kind! Anyway, I hope this helps. I'm sorry I keep rambling on! If you want to know anything else, just let me know, and I will try to answer it for you,


Re:optic nerve hypoplasia



Hi everyone, I am 19 and I have a 6 month old daughter named Jaiden who was diagnosed with being blind 2 months ago. Her doctor told us that her blindness is due to her nerves not developing all the way. i didnt know there was even a name for her blindness and thanks to this message board i have learned so much about ONH. Her eye doctor recommended a MRI but her pediatriician hasnt yet. i was nervous at first to get one for her but now i think if we do it will be for the best. when i first was told she was blind it broke my heart! i cried terribly and had no idea what to do! Her eye doc. offered us little hope. i asked if there was any way she would ever see and he said no....and hearing that my daughter would never see my face or the world or even her beautiful face tore me apart! Week by week i began to feel better about her disability....it gave me more faith in God and we even went to a church and got her prayed for. The preacher prayed for a crative miracle and he said that every day she would get better, and every day i see results....at first the doctor said she wasnt responding to the light he shined in her eyes, but after we prayed for her...i put our cell phone in front of her and moved it and she followed it with her head! right there gave me so much hope! then a day or two later i put a toy in her face and she followed it too. now she even reaches for her toys and if she sees something close coming toward her she blinks really fast like shes afraid it will touch her eye. :) I know God can heal her and i will not let my faith down! i believe the stem cell thing might work but i chose to let God work a miracle! I want everyone out there to know that there is Definetly hope out there and never EVER give up!!!!! I pray for You all! if You need to talk my email is: Lisa_harry09@yahoo.com
Sincerely Cheyenne


Re:optic nerve hypoplasia



My son will be 4 this month and he was just diagnosed with ONH. When he was 18 months the opthamalogist said he had strabismus (lazy eye) but it was just changed to ONH a few days ago... we tried the patches and the eye drops and different strength lens in his glasses...nothing corrected his eye. When he was a little younger I had taken him to a few endocrinologists because of his eating habits...he is extremely picky, he acts like he is afraid of food, he will not try new things, i try to hide good food in with his mac & cheese, etc and he still can't eat it, he went through a phase where he puked up his food all the time, he spits it out a lot... also when he was about 6 months old he ate very very little formula, he was almost malnourished. He has also has a low growth hormone level and the doctors are considering giving him growth hormones, but he is just on the border of whats normal and whats not. i noticed that so many people on this message board have taken their children to endocrinologists, and i was wondering what is the connection with ONH and endocrinology? I was also wondering why do people with ONH take an MRI when they are diagnosed? My doctor did not mention anything about an MRI when she diagnosed him the other day. I have another appointment with her in 6 weeks, maybe then she will say something, but I am really nervous about him having this. I also noticed that a few people here have mentioned their child's level of growth hormones, and what is the connection with that and ONH? He is such a great kid and I thank God this is the worst condition that he has, but it still breaks my heart that he is going to have this for the rest of his life. Any information anyone can give me would be greatly greatly appreciated, and PLEASE feel free to e-mail me at jccboucher@yahoo.com. It's very relieving to find this message board where I can hear about this disease from the parents of children who have it, thank you for starting it!


Re:optic nerve hypoplasia



I def. think that maybe there is quite a bit of misunderstanding here. I agree that as a parent we know our child best. my son started the testing at 4 months and completely diagnosed at 6 months. the drs told me my son probably wouldnt walk or talk until he was 3ish. i worked as hard as i could to help my son succeed. he has. he walked at 13 months and now at 2 yrs old can count to 10 and say his abc's. doctors do as much research as they can and yes they have more knowledge in medical than we do but for us actually living with the condition through our kids provides the doctors with alot of their info. i am in conctact with dr. mark borchert from the childrens hospital of los angeles. he is doing a ton of research on the condition but still needs feedback from parents to further the studies. we all need to work together. i know it is frusterating and very hard and sometimes we just need to vent to know that we are still human. its normal to have the feeling of "why me" but the simple answer is because we are going to be the ones who make a difference! do all that you can for your children or for people that you know with any special need. oh and my advise for a child that has light perception is to put them in front of a mirror. i know it sounds wierd, but they can learn to utilize what vision they have and i personally think a mirror is such a good way to show them movement, even if its only shadows. bright colors, sounds, moving toys, textured toys. everything that you would do for a child without needs except go above and beyond. i think i have posted on here before that i have articles that have been written about the condition but again, if anyone would like me to email them to you please let me know. also if you have any questions or just feel like letting it all out im always here also :)
dallasuhhsaidyes@aol.com
i also have a survey that Dr. Borchert has going that is gathering info please visit the link and provide your info so we can contribute to the research of ONH/SOD

http://www.thevisioncenteratchla.org/site/c.krLPKX...


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its people like you that makes misery in the world i expressed an opinion and you attacked it. im posting these things with opinions lets get that clear...im not a medical professional just a mother working to death to help her completely blind son...and doing a pretty damn good job. i dont ignore doctors or believe antone else in this situation should... ethan and i visit many doctors endocrinologists eye specialists urologists so i do listen to his doctors. it really pisses me off that i post my heart felt story out there and try to help people and some one decides to take it into their hands to criticize what i say. whatever have fun im here to talk and help others not twist their writing into something its not. jerk...


Re:optic nerve hypoplasia



ok no where in mu staement did i say ignore your doctors, i said you know your baby best not ignore your doctors. simply put i meant you know if your baby can see or not and you know your baby better than anyone else... so instead of twisting my words why dont you give advice like your supposed to do instead of letting your judgemental attitudes twist what i said.


Re:optic nerve hypoplasia



I do not know much of what the specific eye condition that you are all discussing, but as a blind adult who has only seen light since shortly after birth,I can give some insight to being blind. I have studied early child development for a major part of my Bacjelor, and it has both made me understand how children avaragely develope and that other techiques would need to be applied when wanting to assist a totally blind child to do the same. Raddles and toys that make sound may stimulate your baby to search out wht ismaking the noise. Tactile definsiveness is quite common in blind babies, I was told my my parents that I hated feeling the water of a pool onmy feet, I love to swim now. Your child can grow up to be just like a sighted child, and each child is an individual. As for schools for the blind, many don't just keep your child away from the real world, and having gone to a public school where I got assistance from a special day room was my experience. My husband spent some time in a school for the blind and I feel that he got time to focus on thigs that I missed such as cooking, housekeeping, and even shop skills that my school was not prepared to allow me to participate in. I do cook and live an average busy life,with a darn long comute to my new job, one that would take someone maybe fourty minutes to reach in their car. We have our own challenges, but there are so many ways to overcome them. If anyone wants to write, I am happy to answer questions due to my own life experiences.
Hayley
hcedick@yahoo.com


Re:optic nerve hypoplasia



*in this case, you certainly DO NOT know what is best for your baby. And thinking like that can absolutely HURT or DAMAGE your child.


Re:optic nerve hypoplasia



First off, I'm a 23 year old male, and I've been blinded by ONH in my left eye for my entire life. However, I've played ice hockey from middle school through college, and generally don't have any true problems relating to the disease, thankfully.

Now, Ethansmom is sending a very, VERY dangerous message when she says not to trust doctors. They DO in fact know more because they went to college, and saying anything other than that is just plain ignorance. It may be tough to admit, but you did not go through years of specific training to deal with these types of situations. In this case


Re:optic nerve hypoplasia



oh and just a bit of knowledge that helped my baby ethan sleep through the night despite his condition. the body produces a hormone called melatonin which induces sleep. or sleeping patterns... if there is a night light in your onh childs room take it out... surprising something that simple can give exhausted parents rest. and no doctor told me that i googled...lol. i once was at my wits end with a child with no light perception staying up till early morning hours and sleeping all day. once i read about melatonin and how light affects the production i cut the night light off and things immediately changed and i mean immediately. the next night he slept through the night. if there is no night light my suggestion is to take your child outside for an hour or so in the morning. there are also things called light boxes...do your own research you know your child the best. be smart and just because doctors went to college doesnt mean they know whats best for you and your baby....only you do.


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ok. to start off i want to say to all parents it could be worse. my ethan was born 40 weeks and 5 days by c section. at 4 months old he was diagnosed with onh and panhypopituitarism. the two seem to go hand in hand in some cases. at first it was tremendously hard accepting the fact my only baby wasnt going to see...now he wouldnt be the same without his condition.like most parents my husband david and i blamed ourselves...a lot. then we decided that god chose us bc we are strong intelligent people who would love their child not matter what. and we do very much. ethan is now one yr old and very determined. he can stand by his self and take steps on his own. he never crawled as most blind babies dont due to lack of motivation he went straight to walking with pure determination. i know he will be smart and use his hightened senses as his eyes. to other parents with this in their life...one thing that helped me was knowing its not a disability but a ability to see the world how one wants to... to use other resources and learn with touch and sound. you would b amazed at how hightened your childs other senses are when they lack on... supermanish if you will. ethan can hear us whispering from across a room. despite all of his problems that little boy is the happiest most playful kid ive ever known. he loves to jump...lol. its a way to stimulate his self. i know how it is to get a diagnosis and the all to farniliar "your baby blind now go deal with it yourself" talk. i took matters into my own hands and went to my local heath dept. for answers. Teis was my god send. tennessee early intervention system. my advice is dont sit back and let the disability of your child take a hold of your life...you take hold of the disability...learn what you can do to help your child. feel free to email me @ michelle690@hotmail.com i would love to help others and get help also...or maybe just cheer someone up a bit.


Re:optic nerve hypoplasia



To BubbaDsmom, my daughter has really no vision at all in either of her eyes, so I don't know if this will help or not. But she uses a clothes hanger to get around. It actually works really good, because when she started walking to it stopped her from running into things as much. She always carries one around. It's a good thing for them to use before they use a cane, because it's a lot lighter and I know that my daughter likes to put it up in the air and stuff so that she knows how high things are. Let me know if this is any help:)


Re:optic nerve hypoplasia



Hi! I would love advice and to be able to hear about other parents with kids with the same situation. I have a 2 year old daughter who's name is Bella. She was diagnosed with ONH at 6 months. She's got no vision, well she can tell the difference when there is a bright light but that's all. She has nothing else wrong with her. Except I think that she might be having trouble growing but not really sure yet if she's really far behind. She's always been really tiny. But I am still taking it very hard. I think that it has gotten harder as time goes by. One of my questions is, is there a chance that her eyesight will improve. I think or opthomologist doesn't really want to tell me the truth because I don't think he thinks I can handle it. I have a lot more questions! If anyone knows anything. Please!!!


Re:optic nerve hypoplasia



my son Devon will be 14 on Jan. 25, 2010. it had been a long road. I was told when he was a year old he had Septo-Optic Dysplasia (SOD) they also say he is autistic. i don't know if they go hand and hand or what. we have been seeing a Endocrinologist for many years for growth. i feel i know nothing about my son or his SOD.. if anyone can help me please email me at ashedge109@yahoo.com please put SOD as the sub.

i also don't know what to get him for christmas?!?!?


Re:optic nerve hypoplasia



my son, damien (we call him bubba d) was born at 26 weeks. shortly after he was born, while still in the NICU, he was diagnosed with ONH.
according to the drs and vision therapists he has no perferal vision on the left side and only has about 60% of his vision.
bubba is now 8 months and is trying to learn to crawl. my generally happy giggly baby is getting frusterated because he cant see all of whats around him and he runs into things.
does anyone know of a way i can help him so hes not getting frusterated as much?


Re:optic nerve hypoplasia



Hey, Jenntick my daughter is now 13 months old and was diagnosed with ONH when she was 4 months old. We have been getting disabilty now for about 7 months. It helps us out so much, with paying doctor bills and everything. We also save some money so she will have some when she gets older. I'm not sure what state you live in but I live in Iowa and it was really easy to get it. If you have any more questions just let me know. You can email me at sarajustin03@aol.com


Re:optic nerve hypoplasia



should my son still do eye therapy?? the specialist said it wouldn't help so we don't plan on taking him back, but i want to make sure i'm making the right choice's for him. i was also wondering if anyone gets disability for this. i'm just asking, i'm trying to make life easier for him and i don't want to sound like i'm doing this for the money, but i'm wondering because when he get's to high school he wouldn't have to get a job and spend that time on his school work.


Re:optic nerve hypoplasia



I am 37 years old and was also borm with ONH but with corrective nerve surgery when i was 6 mnths old and eye glasses i drive i played basketball and softball and vollyball in school i am married and have 3 kids and I will wear glasses for the rest of my life and have a lazy eye but thank god for the Dr that did my surgery when I was a baby ... for giving me a normal life and i still do my eye therpy.... HOPE IS NEAR ...just dont give up


Re:optic nerve hypoplasia



hi um im matt im 14 and i just enterd high school as a freshmen And ONH never really affectted my life because i rarley even knew that i had it just like people that dont have it dont no how it is to have it. so wouldnt worry to much but doet anybody put your child down because i had that problem but i never gave up


Re:optic nerve hypoplasia



jenntick-i would say yes your son should have a MRI to check his pituitary and also to see if the septum pellucidum is missing. my son was diagnosed at 6months old first through dilation of his eyes and then the mri to confirm everything. after that we saw multiple doctors (endocrinologist, neurologist, genetisist, ophthalmologist) he also had a ERG and a EEG to test the brain function with his vision and to check for sezuires. this condition can be from one side to the other. some kids have growth hormone problems, completely blind, g tubes (feeding tubes), some have vision that is very good,nystagmus (the constant shifting of the eyes) it just all really depends. but do a full examination to make sure that you are getting the appropriate treatment. you said your son was already in vision therapy? did they say originally why he needed that? i am suprised they didnt have a ophthalmologist examine him before that. i have alot of articles that Dr. Mark Borchert in los angeles, ca. has published. please email me if you would like me to send them to you dallasuhhsaidyes@aol.com . Dr. Borchert is one of the few doctors doing so much research on the condition. I myself have done alot of research and i attend as many confrences and gatherings as i can on it. i would love to talk to you more about it and help you understand ONH better. i know what its like to be a parent that is confused, its very hard to deal with. but i think the more you understand the condition the better you will feel. like i said i do have quite a bit of info i could give you but its alot to post on here. (if anyone else would like the articles i would be more than happy to email them to you as well) take care and dont worry...your confusion will soon make sense. :)


Re:optic nerve hypoplasia



we just found out a few days ago that my son has ONH. he was in vision therapy for a year and couldn't understand why his aquity wasn't getting any better. they told us that he is legally blind in his right eye. he did great in school this year and he reads fine, i just don't understand it. should he have an MRI?? i've been reading everything i can get my hands on and it says it should be done but his dr.'s haven't said anything about it. i feel like i'm not getting much help from my dr.'s i guess i just need someone to talk to that understands what i'm going thru. thanks


Re:optic nerve hypoplasia



I am a grandparent with a 13-year-old grandson who has severe ONH in both eyes and is legally blind. He also has severe autism and has to take thyroid medication. Other than walking with him in the park and letting him swing (which he enjoys immensely) I am at a loss to find activities which will hold his attention for more than a few minutes at a time. I feel ineffectual and that I'm letting down him and my daughter. I've read that it is not uncommon for autism to be associated with this condition; anybody out there with any ideas or experience with this combination of conditions?


Re:optic nerve hypoplasia



Hello, my name is Yvelise, I'm 25 and have had ONH since I was born. Originally, the doctors declared me as legally blind, but through my parent's persistence I recevied vision therapy and now have 20/60 vision with correction. As a result I can drive during the day and do some individual sports.
A bit of advice for parents... be an advocate for your child and encourgae them to try other actvities because they can succeed in many areas. I was awful at basket ball and soccer but did well in gymnastics, swimming and running.
Also, encourage their academic achievements, this will build their self- esteem and make them fhem feel normal and special.
Luckily with my parent's support, my doctor Schienebeck, and persistence I have my B.A., plan to attend grad school and have lived a pretty normal life.
One last thing, look your children in the eyes, becasue for me personally, I always notice when people look away becasue of the nystagmus- so instill good eye contact habits regradless of the eye movements.
If anyone wants to talk with me more please e-mail me at yvemal@hotmail.com


Re:optic nerve hypoplasia



Hi! My name is Jennifer. My grandson is 6 months old and was diagnosed with ONH 2 days ago. We aren't sure of the extent of his vison loss yet except for the doctor said he will need to go to a school for the blind. I'm an RN and have been researching this extensively for 2 days. I knew from the time he was 2 months old that he didn't see "right". Parents have been in denial. Pediatrician ssent him to a pediatric ophthalomologist because he said "grandma is a nurse and she is worried". Thank God for worried grandmothers. I'm guessing soon he will need an MRI and many appointments with an endocrinologist and neurologist. Look forward to talking to you all.


Re:optic nerve hypoplasia



my daughter is 37 years old. she was diagnosed at 5 months and i was told she would never see. however, doctors say she has learned well to work with the sight she does have. she is blind except to count fingers in her right eye. her left eye is 20/400 with glasses, which she hardly ever wears. she's taking college courses right now and is an a student. it's been rough, but she's beautiful inside and out. thanks to Mr Obama, i may someday see a cure with stem cell transplants. anyone can contact me if they'd like kathiboop@comcast.net


Re:optic nerve hypoplasia



Macie Morse has had this stemcell treatment done and it worked for her. She is now actually the proud holder of a driving permit so I would have to say that stem cells is most definitely worth looking into. Shel
rbikandi3@msn.com for more info.


Re:optic nerve hypoplasia



my name is corriell my 3 years old son has onh.he was diagnoised at 6 months. he just started pre-k and is doing well . i just concerned about school he is really smart.?(he also has nystamus) is there a surgery for this?contact me at corrielldenise@aol.com


Re:optic nerve hypoplasia



My three (almost four) year old daughter was dianosed with ONH at eightteen months old. So far she is doing well. She had strabmisus surgry on the same eye when she turned threeand we have had no vision problems yet. She was diagnosed with a developmental/speech delay a little over a year ago and is recieving services from the school district. She is now being tested for autism. Is it normal for ONH patients to be autistic too? I just want the best for my daughter and I need to know if I am doing everything that needs to be done. Her ophthamologist didn't tell me much when she was diagnosed so I am completely lost. Please email me if anyone has any input or suggestions! navychicktx@yahoo.com


Re:optic nerve hypoplasia



Hello, My name is Cory Raszeja, and I Have ONH, only in one eye, but it is completely blind, no vision whatsoever.... Just to get some input for someone who actually has it, I am currently 15 and about to be 16.. I have been living with ONH my whole life.. I was wondering if anyone could tell me if it is more common to have this in both eyes, and to be blind completely or just impared.... For any parents out there that have their children with the same situation like mine, do not fret... I am pretty sure that they can pretty much lead normal lives... The only effects that my condition caused, is that I wore glasses since I was one, non-prescription (Parents, I HIGHLY-RECCOMEND THIS. YOUR CHILD'S OTHER GOOD EYE NEEDS TO BE PROTECTED!!!) Second thing, is that my depth perception is a little off... Third, I tend to spill and knock over things ( I am blind on my left side, so my periphial vision is not too great to the left)... This, in turn, also effecs my driving and being able to see my blind side...
Also, I have not confirmed this, I have not seen the doctor, or talked to my parents about this I have only read wikipedia, but I think that I am sterile.. to relate this, Wiki says that ONH can cause pituitary hormone deficiencies. The pituitary hormones help control Sex Organ functions in both men and women. Which, in turn, can affect the generative glands, what produces the egg or the sperm... just stating my hypothesis here...


Re:optic nerve hypoplasia



Hi there....this message is for everyone who has posted an inquirey about ONH and what to do about it! My daughter's name is Jordyn and she is now 11. She was born with and diagnosed with ONH at about 3months old. We just returned from Thailand in September for a round of CORD BLOOD(from the umbilical cord only) STEM CELL treatments!!!! These are non-controversial and have done wonders for many families!!! I have tons of information on this and bloged our whole trip and experience...still do! Please take a look at Jordyn's blog to read more!

http://thaistemcells.com/blog/jordyn/

I have personally met with and had dinner with the founders of this treatment and recommend it highly!! It is costly, but for all of us that have gone, we have had benefits and fundraisers to give sight to our children! My email is pumkinroy@yahoo.com if you have any questions!


Re:optic nerve hypoplasia



Hello, I have a friend with a 5 month old son, they just found out he has ONH, She came to me for advise because my 9 month old daughter has down syndrome and thought I'd know what to say. I've been researching about ONH, and still am not quite sure what to say. I do know what it is like to have a child with a disability, but not this one. Any advise for me or her? Please let us know. Thanks... jarredandwhitney@yahoo.com


Re:optic nerve hypoplasia



Hello, my son was born with ONH at six months and has been wearing glasses ever since. It mainly affects his right eye and he see's only light/shadows. However, despite low vision in his left eye he adjusts so well. He reads at a second grade level-he just turned 5-and he reads things as we drive. His favorite color is also puple just like another child I just read about here. I was wondering if any of you who has a child with ONH have any difficulty with feeding and getting your child to eat. Mealtimes, esp dinner is a nightmare. He only eats certain things and its a constant battle to try anything new. He also has OCD like tendencies-counting, telling the time, etc. And is very easily upset. If there is anyone who finds this familiar or can help in any way I would appreciate any insight. Thank you


Re:optic nerve hypoplasia



I also graduated college with my ART degree. Yes I Am an artist. I paint, draw,andtake photoghraphy. you can see a few of my pieces at www.vbsstudios.com. So, in closing, ONH does not stop you from truly seeing the world itt just changes how you see the world


Re:optic nerve hypoplasia



HelloEveryone. Iam a 32 year old man from Ohio who has ON. I have lived with it my who life, of course. It affects my Right eye mostly. However, my left eye is nearly 20/200. What I want you all to know is that It has not stopped me from being and doing what I want. I graduated High School in the top half of my class.


Re:optic nerve hypoplasia



Hello Everyone-
This week is Thanksgiving and I am so very blessed. I am the proud mother of 3 girls. My first born daughter, Kara Sue was born with ONH. When she was 2 months old, we learned that she was blind. We were told she would be very dependent. Unable to really "function" well alone. WHAT A CROC!!! Kara is now 10 years old. She is the most INDEPENDENT person i know! She has taught me so much about life, including strength, determination, sucess, love, faith, encouragement and grace. Kara loves to sing in front of an audience. She has been such an inspiration to so many people. I want to learn more about the new "stemcell treatments" being done in China. How safe are they? How much money needs to be raised? Kara has always said her favorite color is purple. It has always been my prayer, that she would get to actually see the color purple one day. Praise God! That day is coming sooner than expected! Please email me if anyone wants to talk. one_faith_mom@yahoo.com HAPPY THANKSGIVING


Re:optic nerve hypoplasia



hi i am jabari. i have onh w/nstagmus and i may be only 17 but i am a very intelegent person. i am often called super blind because of all the things i do like other normal kids. i am 20/800 in my right and blind in my left eye. i am a seinior in high school. i am also a phi beta sigma(fraternity) to be. i attend the center for the visualy impaired. (please visit our web site www.cviatlanta.org)
i am vice president of our youth program stars. seing as though i am still living this i have lots of helpfull advice feel free to e-mail me any time


Re:optic nerve hypoplasia



MY NAME IS DENISE, I HAVE A 7 YR OLD DAUGHTER WITH ONH. SHE WAS DIAGNOSED AT 2 1/2 MOS OLD. I WAS TOLD AT HER FIRST VISIT TO THE OPTHALMOLOGIST THAT THERE WAS A CHANCE FOR HER VISION TO BE FINE, BUT AT THE FOLLOWING VISITS I WAS TOLD THAT SHE WAS NEVER GOING TO BE ABLE TO SEE ANYTHING BESIDED LIGHT AND DARK. AT 2 YRS OLD SHE STARTED FOLLOWING LIGHT AND POINTING OUT SIMPLE OBJECTS. AS TIME WENT BY SHE SEEMED TO NOTICE MORE. BY THE AGE OF 5 WE WERE TOLD THAT SHE IS COMPLETELY BLIND IN HER LEFT EYE BUT HAS 20/670 IN HER RIGHT EYE. SHE CAN WATCH TELEVISION RIGHT ON TOP OF IT, CAN IDENTIFY SHAPES THE SIZE OF A DIME, CAN READ SIMPLE WORDS IN VERY LARGE PRINT, BEST OF ALL SHE CAN SEE US. SHE IS TAUGHT TO READ BRAILLE, WHICH SHE DOES VERY WELL, BUT I ALSO MAKE HER USE HER VISION. WE WERE TOLD THERE IS NO HOPE, BUT I NEVER STOPPED HOPING. FOR THOSE OF YOU WHO HAVE INFANTS AND BELIEVE THERE IS NO HOPE, STOP, AND START BELIEVING THERE IS. WORK WITH YOUR BABY NO MATTER WHAT YOU THINK THEY CAN'T SEE, IT JUST MAY SURPRISE YOU THAT THEY CAN. I NEVER STOPPED WORKING WITH MY DAUGHTER. I USED TO SIT IN A DARK ROOM AND PLAY WITH FLASHLIGHTS WITH HER. ALL OF HER TOYS LIT UP AND PLAYED MUSIC. WHATEVER YOU CAN DO TO STIMULATE YOUR CHILD, DO IT. IF ANYONE NEEDS SUPPORT OR JUST SOMEONE TO TALK TO WHO IS GOING THROUGH THIS DO NOT HESITATE TO E-MAIL ME AND I WILL GIVE YOU MY NUMBER.


Re:optic nerve hypoplasia



hi my name is rachel my daughter will be 9 months on october 7th. She was diagnosed with ONH when she was 2 weeks old. she had seizures in the hospital. She went for her MRI and when she did they found that she has an undeveloped petuitary gland as well, she is very tiny for her age there are 4 month old babies who are bigger than her, and she still fits into new born clothes. But she deals with it very well, she loves to talk she says some simple words you wouldn't hear a 9 month old saying like dog, or nine or mine. and she loves to more and when you try and help her she gets really mad. We were told that theres a chanc she could see fine, but being her mother i dont think that she will, or can. but she is doing fine and developing fast then other normal kids her age.


Re:optic nerve hypoplasia



Hi my name is Allison, I will be 20 years old this year I am from Louisiana. On Nov. 27th 2006 my son was born. When he was 3months old we dicovered that he was not looking at thing. We brought him to the eye doctor and he sent us to a specialist. He told us he had (ONH). He will be 2years old on Nov. 27th of 2008. He is in the earlysteps program. This is one of the best things that have ever happen to us. He is doing well to be blind. He gets around so go. You would never know he could not see. I would really like to get to know more mother that their kids have this. I have so many questions, only a mother can answer. My e-mail address is allison_cloud_08@yahoo.com if any one want to talk about thier problem and what they are going through. I would know i am going though it to, I know its hard. I don't have anyone to talk to.


Re:optic nerve hypoplasia



I was diagnosed with ONH as a baby and have grown to live a full, successful life despite the disease. My parents raised me as if I did not have a special condition, to be a normal child at home and at school. This being case, I never felt as though I was unable to pursue the things that interested me, although I am almost completely blind in my left eye with slightly impaired vision in my right. I went to public school, graduated salutatorian of my high school class and then cum lade from UCLA. I also participated in sports that required less hand-eye coordination such as track and rowing. At UCLA I was in a sorority, was assistant head of the admissions department and did my fair share of dating. Currently I am working at a law firm (my boss, an equity partner at the firm, is completely blind) and will start law school in the fall. I attribute much of my success to the way my parents handled my ONH when I was younger. Because they treated me normally I knew no different then to feel and act the same. Though I certainly have days I would love to have perfect vision, ONH does not have to prevent a person from achieving success.

Things that helped me growing up: As a toddler my parents did do many of the eye strengthening exercises recommended for me by the opthamologist such as putting a patch over the stronger eye during certain activities. They say this definitely had a positive impact on my sight. They also got me involved in extracurriculars such as ballet to help my balance – a few years of led to a big improvement in my stability. Although I didn’t take advantage of my university’s Office of Students with Disabilities, I wish I had. The academic world is a competitive one and this would have made it easier to get the materials I needed.

If anyone has any questions, concerns, or just wants to hear about life with the disease email me anytime at nicoleswilson@yahoo.com.


Re:optic nerve hypoplasia



Hello. My name is Katelynn and i have Optic Nerve Hypoplasia. I was told by my parents that the way they found out I had an eye problem is that when I was with my aunt my left eye rolled back, she freaked out and took me to the hospital. There the doctor told my parents I was blind in my left eye because of ONH. I am 15 now and my mom still makes a huge deal about it saying I need more time on tests and such, but I am a really smart kid and usually get honor roll. I don't blame my mom for worring but I want her to think of me as a normal kid. My cousin Mathew also has this problem but no one else in my whole family. I do have a prblem with sports though but I don't let it get to me.
My friend enjoy goofing around with me by moving there hand by my left eye and laughing about it but I know they are joking around and I laugh with them.
I hope someday I can get it fixed but for now at least I can still see out of my right eye.


Re:optic nerve hypoplasia



I have a 1-year old little boy who was born with ONH. I just wanted to share our story with anyone who is interested. Three months ago we went to China for a stem cell treatment. The results for Justin have been remarkable. It is very hard to put into words how it felt witnessing my son see me for the first time. He went from very little light perception, to vision that (right now) is estimated to be 2400 (or, the first 2 rows of an eye chart). Since coming home from China he almost immediately started crawling and hasn't stopped since!

Our website is: www.justinsfightforsight.com

Our China blog from our treatment is: http://stemcellschina.com/blog/justinl/

I love to share our story becuase I know what it feels like to be hopeless. We had a miracle with Justin and I wish every ONH child could be treated.

Feel free to email me if anyone wants to talk:
lowery-family@hotmail.com


Re:optic nerve hypoplasia



Hello my name is Jamie. I have a 6 wk old daughter named Ariel that has been diagnosed with septo optic dysplasia(SOD). SOD is the same thing as optic nerve hypoplasia except that children that have ONH and a missing septum pellicidum are diagnosed with SOD. She dosen't show any signs yet, however we found out so early because of a sonogram showing dilated ventricles when I was 27 wks pregnant which made my doctor recommend a MRI be done on Ariel immediately after she was born. The MRI showed that she has a condition called closed lip schizencephaly and as I said earlier she has septo optic dysplasia. I would like to know if the development, hormone problems, and sight is worse in children with septo optic dysplasia than in children with optic nerve hypoplasia? Please email me at jamieburks@juno.com if you can answer my question or if you know anything about it. I would really appreciate it.


Re:optic nerve hypoplasia



there is HOPE with using Your own stem cells. We have them, but they just kinda sit there. There is research being done "Stem Cell Optic Nerve Regeneration"

Main Category: Biology / Biochemistry
Article Date: 25 Feb 2005 - 14:00 PST

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For the first time, scientists have regenerated a damaged optic nerve -- from the eye to the brain. This achievement, which occurred in laboratory mice and is described in the March 1, 2005 issue of the Journal of Cell Science, holds great promise for victims of diseases that destroy the optic nerve, and for sufferers of central nervous system injuries. "For us, this is a dream becoming reality," says Dr. Dong Feng Chen, lead author of the study, assistant scientist at Schepens Eye Research Institute and an assistant professor of ophthalmology at Harvard Medical School. "This is the closest science has come to regenerating so many nerve fibers over a long distance to reach their targets and to repair a nerve previously considered irreparably damaged."
-for the rest of the article
http://www.medicalnewstoday.com/articles/20334.php


Re:optic nerve hypoplasia & nystagmus



My infant had eye issues from birth. I am disappointed in the doctors that refused to refer us until he was 6 months old to be daignosed with optic nerve hypoplasia in his left eye and nystagmus in both. I was upset when I found out it could be linked to brain damage. Thankfull the MRI showed no signs of this, but I have been warned that structure can be perfect but functions can be limited.
Now my son is almost 10 months old.
He tollerated patching the good eye for only a few weeks. With his limited sight we don't know what to expect the doctors really only said that his depth percetion will be off and we won't know what he see until he can tell us. Well if he develops a speech delay then he could be 3 years old or 4 before that happens.
I am only concerned with what thing I can do to help him learn.
Does anyone with limited/partial sight need a service aniaml?
What do I need to do to train one, is there an offical course for the animals training?
Anyone get social security with partial sight?


Re:optic nerve hypoplasia



Everyone you need to start researching stemcells. They have a treatment for ONH!!! Start with stemcells.china
It's only the beginning there is so much hope :)
rmorse@psdschools.org


Re:optic nerve hypoplasia



I just have one more thing to add, i read one of your posts that said "dont shelter your kids just becaus ethey have onh" I COULDNT AGREE MORE my parents still made me do things on my own, they tried not to baby me, and it made me stronger, they made me get dressed by myself and tie my own shoes...clean my room and all the other normal things kids do, its super important that you prepare your kids for independence, i know we as mothers dont want any danger for our kids, and we want them close to us at all times, but your ONH child will thank you, if you treat them like any other child!!!!


Re:optic nerve hypoplasia



Hi there all of you, my name is Kalie, im 21 i have Bilateral ONH and was diagnosed when i was just a baby, ive had plenty of eye surgeries to correst my nystagmus of stop the shaking of my eyes, although they do still move a little, it is not nearly as bad as it used to be. anyways i just wanted to give all you mothers some hope. You need to be thankful that your babies are happy and healthy, yes living with ONH is hard as heck, there were times in school where i wish i hadnt been born, but i thank god every day that im here, i have 2 beautiful children who are fully sighted, my eyesight is about 20/100 in my bad eye and 20/60 in my good eye and that is with glasses. My husband is my savior, he is amazing, somedays i feel inadequate as a mother, but my children love me no matter what, and they have always lived this way, so i guess its nothing new to them! if any of you mommies out there have any questions for a girl who has lived this life, please please email me, i could use some support too! :)
KJB92802@aol.com
Thanks all Kalie!


Re:optic nerve hypoplasia



My grandbaby was diagnosed with ONH today. I cannot stop crying. She was born 4 weeks early with pulmonary hypertension and went into shock. We nearly lost her. And just when I thought everything was okay, we got this. We don't know what to expect, or how bad it is. I'm not dealing with this well.


Re:optic nerve hypoplasia



My daughter is 21 and has onh. She was not diagnosed until she was 17!!!! She had a seizure disorder as a baby, and had regular visits to the neurologist, but no one caught her vision problems. I always knew she couldn't see because she was always walking in to things, looking down as she walked and running into things. When she was first diagnosed I was always asking if she could do things, being afraid she would get lost at the grocery store, etc...Then I realized she had traveled all over Europe without me, and she could probably handle going shopping! Her vision seemd to fluctuate, depending on the doctor. Recently she was told her vision is 20/200 with glasses, but she has been getting headaches with her glasses. We are in Germany, and no one seems to informed. Anyway, she is studying chemistry at a university, sings beautifully and her room is a mess, so I guess a pretty normal kid! I think ignorance was bliss, I expected everything normal because I didn't know she couldn't see. She takes it all in stride, especially my jokes of having our very exuberant herding dog trained as a seeing eyedog!


Re:optic nerve hypoplasia



Hi my daughter is 6mos and was diagnosed today. Needless to say, I was emotional. She's goes for an MRI in 2 weeks and I'm nervous about that. But I feel encouraged reading the responses. I'm now doing my research so I can become "educated" on the condition. I know my daughter will have a wonderful full life.


Re:optic nerve hypoplasia



Hey all,

I just wanted to let you know I live in China andwe do have a treatment for optic nerve hypoplasia using umbilical cord stem cells.

You can see some coverage of patients regaining their site here:

http://www.nbc-2.com/articles/readarticle.asp?arti...
http://www.fox4now.com/Global/story.asp?S=7318176
http://ozarksfirst.com/media_player.php?media_id=2...

Hope you find this useful.


Re:optic nerve hypoplasia



Hello all,

I am a 30 year old girl who has had ONH her entire life...I am almost totally blind in my left eye and have 20/200 vision in my right eye. I am told by my parents that I was born totally blind. My mother was only 17 years old when I was born and in the 70s they didn't know a lot about this at all. I was diagnosed as a little baby and my parents thought that I was going to be completely blind forever. Like many of you they cried and were devastated of course! However, they picked up the pieces and wanted the best for their little girl. They brought me to many specialists in the New York and New Jersey area because I was not responding to colors and light when they waved toys and fingers in front of me.
I talked very early (9 months, was singing very early!) yet walked at 18-20 months (like many of the children on this board.)
However, I want to tell you all some great things...HOPE FLOATS!! Apparently around age two, there are growth spurts in the optic nerves that happen sometimes, and this happened in my case. I gained some vision in my right eye and was able to see to a point of 20/200 by age 2.
I want you all to know that your child should not be sheltered and should be treated just as your other children. My parents treated me just like my other siblings and allowed me to be very independent and figure out things for myself as best I could. I went to a public school and was even in the gifted and talented programs!

As a result, I grew up to be a confident adult who sings in front of thousands of people, got her bachelors degree (full scholarship), Masters Degree (full scholarship) her own apartment, dates like crazy, and has been a Marketing Director and is now an Account Executive for a Public Relations Agency near Manhattan NY.
(AND I DON'T EVEN DRIVE!!)
I am completely independent and I've figured out a way to do so by being a little bit different, I've had to cultivate my personality and learn how to make good friends and be smart...

Things that will help your child----a great support system like The Commission for the Blind whatever that is in your state (happened to be in New Jersey) was mine and my parents lifesaver...they taught me typing lessons, gave me vision aids like a monocular so I could see the chalk board, would have taught me Braille if I needed it, and paved the way for understanding among my teachers (i.e. I had large printed materials, always had untimed testing, sat up front in class and at assemblies/ class trips etc..) They introduced me to other visually impaired kids, provided the way for me to have voice lessons when I was older, and made me everything I am today (in addition to my parents' love and support.)

I did have strabismus in the left eye and did have a surgery on it at age 25 to correct the look of it.

My mother is signing up for the board too and is going to post to all you moms and dads who feel so hopeless now. Don't worry; your children are going to be fine! I'd like to talk to any and all of you who'd like to write with any questions....

Please feel free to talk to me, ask me anything about ONH, dealing with it growing up, how it effected me physically, emotionally, how people perceived it, what aids I used/ use now/ who my doctor is ( Dr. Ronal Siwoff of Denville NJ is THE BEST EVER!!) I can be reached at rachaelfisher@gmail.com


Re:optic nerve hypoplasia



My son is 2 years old and has ONH. He is currently in a early intervention program, but will soon be turning three which means transitioning to a preschool program. I'm really scared. If anybody has gone through this transition process please e-mail me @ carolanddennis@sbcglobal.net. Thank You. I really hope to hear from somebody.


Re:optic nerve hypoplasia



My name is Melissa and I am a 27 yr old mother of 3 (8 yr old daughter, 19 month old son, and 4 month old daughter ). My 4 month old daughter Kayla was recently diagnosed with bilateral ONH with nystagmus in both eyes. The eye specialist I saw didn't really explain this condition to me. All he told me was that she could see, ,just not very well and perscribed her eyeglasses of + 2.75 which I have no idea what her vision is. And he said that her nerves might grow with her and that the glasses might help improve her vision. And she sure looks adorable with glasses at 4 months. I have had to research this condition myself to try to understand it. And I am very glad that I have found this website for it gives me hope.... She is scheduled for an MRI on the 23rd of July and I am very scared. My pediatrician has told me that she acts like a normal 4 month old, ( she is very vocal, smiles, giggles, reaches for toys when in front of her, but not sure if she can really see them, and loves to stand up). She weighed 6lbs 1 oz, 18in at birth and now she is 14lbs 2 oz, 23 in. I would love to have someone to talk to in my situation and would love any kind of feed back and advise and any help I can get. I just don't want to feel alone. Please contact me at melissahrivas@msn.com.


Re:optic nerve hypoplasia



My first daughter was diagnosed with ONH at around 5 months. At 24 weeks pregnant she was diagnosed with Hydrocephalus and they weren't sure what else might be wrong. All I can say is that my story is very long and very sad, but I don't want to discourage anyone, I just want to provide information, I'll try to keep it short. To all of you who found out early, you are very lucky. I worked at Childrens Hospital Los Angeles at the time in the PICU and had access to the best most notable doctors, and still had a terrible time getting an accurate diagnosis. Until we finally took her to the ophthalmologist, which took forever to get the referral from the insurance, everyone thought we were doing something wrong. There was no explanation for why she refused to eat and if she did take a few ounces why she projectile vomited almost everything, every time. Or why she didn't gain weight, couldn't hold a temperature, and so on and so on. Once we finally did get her diagnosed everything was explained. The ONH caused her hydrocephalus, it effected her pituitary gland and hypothalamus so her hormones were off and the hypothalamus controls your hunger and thirst so that's why she didn't want to eat. Her growth hormone was low, that's why she never gained or grew bigger (at 9 months she finally reached 9.5 pounds, she was born at 6lbs, 4oz).

The doctor who diagnosed her was Dr. Mark Borchert at CHLA. He is a wonderful doctor who really cares about his patients and has a special interest in ONH. He has been running a study on ONH to find out why it has suddenly become such an epidemic. We did agree to become a part of the study, but unfortunately our little girl didn't make it long enough to be fully evaluated. To be real and honest it is rare but ONH can cause death. My daughter's optic nerve wasn't that affected and that is the really weird and scary part of this condition; it really does run the gamut in symptoms and outcomes. Some people don't even know they have it until they hit their head and get a scan; some are blind from the beginning. My husband and I spent every minute of everyday trying to get our little girl to eat. She would only tolerate breastmilk, but couldn't breastfeed so I pumped every two hours day and night. We set the alarm at night to get up and feed her because she would sleep through. And still wouldn't put on any weight. We ended up having to get her a g-tube, a tube that goes directly into her stomach and we would have to give her milk that way. We really had no choice, but I still regret agreeing to the surgery, it seemed like she just gave up then. Her heart stopped exactly one month later.

She will always be my heart, my angel and my first born. I have two beautiful children now, who are very healthy and I know she gave us my son, I got pregnant with him within days of her passing. I encourage all of you to contact Dr. Borchert, I've included a link below. My daughter was the first of his that died, so I don't want to scare anyone it is not a common symptom of ONH, but it is reality. If you want information from a reliable source, and someone who can evaluate your child accurately no matter where you are (where you live doesn't matter), please contact him.
http://www.onesmallvoicefoundation.org/borchert.ht...


Re:optic nerve hypoplasia



Hi. My daughter in now 15 mo. and was diagnosed with ONH at 6 mo. of age. We are seeing a wonderful specialist in Madison, WI. They ran an MRI on her also which can back normal. They also did every blood test in the book and they all came back normal. So they are not able to get any answers why. She is blind in her right eye and is extremely near sighted in her left eye. She has a pair of glasses that really helps her left eye. She is doing wonderful but behind in many of the mile stones. She just learned how to crawl and is now working on walking. What has helped us is that we are enrolled in the birth-3 program in our county and the therapists that she see not only help her but are such great listeners for us. It was very hard when she was first diagnosed and we went through a "why her" period, but now we just look at her and think what a little miracle. She is learning and figuring life out and is such a happy little girl. And makes a person take a step back and realize what really counts in life.


Re:optic nerve hypoplasia



My grandaughter has ONH and diagnosed at 3 months. The doctor's report, two different ones, say she is legally blind. So far she is pretty much on target developmentally but not putting weight on feet or crawling.She is always so happy and full of laughter. Can anyone tell me what their expierience has been with a child that is older.


Re:optic nerve hypoplasia



Hello, my name is Melissa and I have a 4 y/o son named Aaron who has ONH, has a speech impairment and is also developmentally delayed. When he was 2 months old the doctor's check his eye sight twice and said he could see. Once he got out of the hospital at 2 1/2 mo I notice that his eyes would wander. I took him to a different doctor and he diagnosed him with ONH. I cried so much and still till this day I cry. I did not know that ONH was so common until I found this website. I am curious to find out if any parents have a son/daughter that use to say words and all of a sudden stopped. My son used to say words when he was 2 1/2 y/o, he is 4 y/o and does not say any words except for "good" and "mama" when he is feeling sick. God bless you all and your children. mbsilva@utpe.edu


Re:optic nerve hypoplasia



Hi Laureen,
Your lucky to have gotten a diagnosis while your son was so young, my daughter was 3 when an opthamologist (our 4th one) diagnosed her with ONH. Fortunatley we had already begun early intervention. An MRI is routine, my daughter had one at 9 mos, which showed normal brain development, which was a big relief. She had another MRI 2 years ago because she needed to have corrective surgery on one of her feet (not related to ONH of course) and the orthopedist, being a good doctor suggested we have the MRI prior to surgery. After the MRI we went to a pediatric endro and found she had a thyroid problem as well as needing growth hormone. She had always grown normally, so it never crossed our. or her pediatricians mind, to see and endroconologist. She is a normal healthy 11 1/2 year old now. She is a smart cookie and she has a great personality. We have had some struggles as far as school work is concerned, with the right teachers your son will be fine.


ONH



My son Garrett was born june 11, 2006; I was 20. He was diagnosed at 3 1/2 mo. old. I remember the day he was diagnosed. I was at work, and his biological father took him to the doctors. Garry called me at work and told me, "Sarah, Garrett's blind." I collapsed in tears, a full out sobbing mess, at work. Garrett was about 4 mo. old and Garry and I broke up. Garry has nothing to do with Garrett now, but my fiance has taken over. He loves Garrett like his own. We were told Garrett's vision would never get any better or any worse. But Garrett's eyes are better than they were when he was an infant. He will be 3 this June and we are dealing with some hard developmental milestones. Garrett didn't walk until he was 20 mo. old. He still doesn't use a cup, because he has trouble judging the distance of the liquid in comparison to his lips, he doesn't use silverware and doesn't talk full sentences yet. He says "drink" but not "I want juice". If anyone has any ideas on what to do to help for developmental milestones or any questions about what goes on with doctors and such for your child, I can help with that, up to age 3 anyway. My email is sarahlee_2006@yahoo.com


Re:optic nerve hypoplasia



I have a 8 mo old daughter that has just been diagnosed with ONH. She has had an MRI which we were told was normal. She has not started sitting up unattended or crawling. She also does not like to eat baby food from a spoon, she only wants her bottle. Does anyone have a similar situation, is this normal? Lately she has started waking up during the night crying. I am looking for the best Doctor possible regardless of where they are located? Can anyone help? Email:coxj312@yahoo.com


Re:optic nerve hypoplasia



Hello! My daughter is 6 months old now but when I found out she ONH she was only 4 1/2 - 5 months old. She had to get a Mri also. Now she is going to another specialist to see what can be done. Here is a web site that is helpful to know different thing when they are explaining things to you http://www.aniridia.org/conditions/optic.html.


Re:optic nerve hypoplasia



Hi. My name is April and my youngest daughter Madison who will be 7 month March 9th was just diagnosed with ONH a few days ago. Can anyone tell me some more about this and what I can expect. We had the MRI done and its just that her nerves are too small. We go to Childrens Mercy Hospital on March 21 to see a Neuro Opthamologist {they just got her and said there are not many of these doctors around} so I just wanted to see what might be done and all that. Please email me at j_awasson@yahoo.com or even add me on messenger. Thanks.
~April


Re:optic nerve hypoplasia



My third child, Killian, was just diagnosed with ONH at 4 1/2 months. My pregnancy was normal but there have been a few things: when he was born, full-term and healthy, his pallor concerned the nurse and he was watched for five minutes. He developed severe jaundice a couple of days later that lasted 2 months. He is big, 18 pounds at his 4 month check-up, although proportional in height and head circumference. Our next step is to meet with the Ped. Endocrinologist. Anyone have experience with these other symptoms or conditions?


Re:optic nerve hypoplasia



Our son is 16 months old now. At about 2 months we were told that he was blind. He was diagnosed with bilateral ONH, and various other endocrine disorders.
We have tried to be diligent in getting what every we can for him, he is seeing a visual therapist, occupational therapist, and an osteopath.

The good news is that we see improvement. He recognizes you when you are close by, and tracks objects moving at farther distances. He now can reach and explore toys close to him. The physical side to him has also been delayed, but he is now rolling, and sitting. his favorite thing now is to walk around the house with our assistance.

if anyone would like to talk or has any suggestions please email me at brianjorge@sympatico.ca


Re:optic nerve hypoplasia



hi my name is tonya and i am 20 y/o with two boys trever-19 months old and tayten is 6 months old. my youngest is having some problems.. he doesnt seem to focus on anything just lights he dont look at me either he also is about 2-3 months behind like he doesnt hold his head up very well nor does he bear any weight on his legs, he also does this thing where his eye balls twitch up and down like his eyes are having a seizure. he goes to the eye specialist monday and they are thinking he has onh. i am scared if anyone has anything like this going on please write me tonya.cains@sbcglobal.net


Re:optic nerve hypoplasia



my name is heather and i am a young mother of two. my oldest son has onh, he will be two in may. he is not walking,and just started crawling in october 2006. i think he can see a little bit light and dark,bright colors ect., he is so beautiful with bright blue eyes. i found out his condition when he was 5 months old , i think i knew it before he was diagnosed .he never looked at me.. i have been in denial and i feel sorry for myself quite a bit.i hope that is normal, i dont know what to think about it other than keep praying, god wouldnt give us anything we couldnt handle. onh makes me really sad for him. i wish that i could give him my optic nerves, if there were a surgery for it i would have it in a heartbeat.


Re:optic nerve hypoplasia



Hi Lisa.
In England an M.R.I scan is done as soon as ONH is diagnosed to check the degree of missing/absent optic nerve (my daughters left optic nerve is totally absent)and other brain structures which may affect development and growth.
I have been told by all of our doctors that ONH can not be cured and my daughters vision (who is totally blind in her left eye) will never be able to be corrected in any way.
I would be very interested to hear from you if you know of any new treatments/procedures which can improve vision.
Good luck with your daughter.
I wish you both well.


Re:optic nerve hypoplasia



In our case, the purpose of the MRI was to ascertain if the brain structure was normal. The only abnormality was the underdeveloped optic nerve.


Re:optic nerve hypoplasia



My 5yr old daughter was diagnosed just last summer...and we have been rolling with it ever since...lost my job ovewr all the doctor visits, etc...

I had her at 32, my firstborn was 10yrs -so there was definately a lapse between pregnancies. Other than that, it was the healthiest I had ever been, go figure.
She is 20/400 in her left eye, and pretty much normal in her right eye. She had a CT scan before the opthamologist visit, because at first we thought it was a tumor causing the black sopt on her retina! Her eye started to drift by 1 yr old - but other eye docs said "oh it's just a lazy eye, it'll fix itself"
ya, right
So far, her endocrine looks normal, but a little on the lower end of the scale. Her bone growth is about 1 1/2 years behind, so we are having to test her every 6 months to watch that...

I see that many of you have had an MRI - I am having a hard time getting my doctor to order one. He says it won't show the optic nerve, so why bother. I want to have a definitive look at where the nerve is small, or if it is missing altogether, etc... Isn't the MRI the best way to see that? I also wonder if anyone has had an Evoked Potential test???
My hope is that I can get her into a research program and that her lack of other severe symptoms might make her a candidate for vision correction down the road.
I am praying for all of us, and so sorry for those who have the more severe form of this defect, it makes my heart break to read your stories - but I agree that these kids are gifts from God, and they bring a light to our lives that is beyond compare !!!
I would love some feedback!
my email is journalgrrl@yahoo.com
mY name is Lisa, daughter is Laney... and other than the sight, and being small, she is sharp as a tack! :)


Re:optic nerve hypoplasia



hi my name is brittany and my son is 6 months and was just diagnosed with onh and nystagmus. i dont know much right now, he is suppose to get an mri soon and i guess ill find out more then. i am really curious about the lady that said the cleveland eye center is working on a surgery and also if the nystagmus ever gets better so if you know anything i would love to hear what you have to say, i am open for anything really, i would just like to talk to someone, especially someone who has a child whose vision has corrected itself. my email is bmav5@yahoo.com thanks!


Re:optic nerve hypoplasia



Thank you. I tried patching religiously for a few months, and when I went in for her checkup, I was very discouraged by the doctor's manner toward us and the situation. I left not knowing whether I should keep trying or not, and I have only patched her eye a few times since then. She can see colors, and I have worked with her in that regard. She is 3 1/2, but she doesn't like the patching, and it has become a very stressful, headache-inducing experience for us both. The eye doctor I saw at Texas Children's told me the same thing you have. Thanks again for your response.


Re:optic nerve hypoplasia



Suncrownedsky: My daughter who is 17 months is totally blind in her left eye and doctors are hopeful that her right eye is near perfect vision-although this can not be confirmed until she has a formal eye test at 3.
All of her eye specialists are against patching as they feel it would be to distressing for her due to her vision being greatly reduced.
Also we were told that there is no evidence that vision in an eye affected with O.N.H will improve (with or without the help of patching)
Good luck with whatever you decide.


Re:optic nerve hypoplasia



My daughter has unilateral ONH in her left eye. The ophthamologist said I could patch, but that he didn't think it would do much good. She has perfect vision in her right eye. Are any of you in similar situations patching?


Re:optic nerve hypoplasia



I found out almost a month and a half ago that my son has bilateral optic nerve hypoplasia. His vision is really poor. He can tell when it's light or when it's dark in a room, and sometimes he can see bright lights when the room is dark enough. He responds to voices really well though and loves to be touched and talked to. My son is 5 months old now. He was almost four months old when he was diagnosed. He has something else wrong with him also. He has a cist in his brain on the left side, and he has to have surgery on 12/14/06 to have it drained. It's scary, but I know that he will do well. He is a strong and determined little boy, and he is also a fighter. My son is so amazing. I really can't describe it. My e-mail address is hendersonre@cr.hamiltonia.edu.


Re:optic nerve hypoplasia



hello,my name is bridgette.
my son joe was digno.severe optic nerve hypoplasia in both eyes at the age of 6 months.joe is now 10yrs old.I could never find any groups for support just to talk to until today.I just came across this site.I am always willing to talk .Maybe now i dont have to feel so alone.any way here i am.maybe i can help anyone who is interested.
coolwater619@aol.com


Re:optic nerve hypoplasia



CLAIRE/FAITH my email address is damonharrow@homail.com


Re:optic nerve hypoplasia



hi my little girl is 21 weeks old me and my partner found out that our little girl faith has ONH i couldn t delieve it she is so beautyfull we first notic something was wrong when she was about a month old she could't fosous on anything and she wasen t looking at me when i was feeding her the first lady who we saw at the hospital told us that she was blind (and that was it i broke down) we then went to see an eye doctor and he said faith has ONH iv got so many questions and we dont go back to the hospital until jan 07 iv been reading everybodys concerns and comments if anyone nos a bit more about it (eg do babys with ONH cry and when shes looking round its more her right eye wot do babys with ONH do i would love to get a responce PLEASE PLEASE CLAIRE/FAITH XX


Re:optic nerve hypoplasia



My grandson has been diagnoised with a lazy eye, or hypoplasia basically blind in his left eye. He is in 1st grade and basically does excepionally well with his blindness in his left eye. He was average and above average in some things in development. However his frustrations occurs when he has to patch his good eye. I have been told by three different doctors glasses nor surgery are an option they want help. Hope the patching strengthens the right eye. Surely there is something or a doctor that knows of something to do to correct this problem. I keep hoping anyway. I hope each of you will pray for him as I will yours. Let's not give up on a corrective procedure being discovered before it is to late. However my grandson functions exteremly well with his one eye of 20/20, but sees nothing he says with 20/80 and he gets really really mad and frustrated with covering his good eye. He is precious and sooooo sweet.Remeber us especially him when you pray, let's pray for each other and a miracle. If you know of a specialist who specializes in this problem please e-mail me with your experience with them. orrlou4@yahoo.com


Re:optic nerve hypoplasia



Hi my daughter was diognosed with ONH ten years ago.
8 months ago we lost our daughter to cancer, could ONH, be connectd to that in some way?
Really appreciate ant help in this matter
Georgina


Re:optic nerve hypoplasia: Jessica's Mum



Jessica, my daughter was not diagnosed with ONH until she was 2 1/2. Her MRI was normal. She was walking not long after her first birthday. Hope this helps.


Re:optic nerve hypoplasia



Hi..my name is John and I am following up an earlier posting I have. My daughter has Optic Nerve Aplasia and I am looking for those who have a child with this or at least one who is diagnosed SEVERE Optic Nerve Hypoplasia I would prefer to speak with those w/children who have no vision at all (including light) and very little if not, no mid-line issues. My e-mail is janitorcap@hotmail.com.......I am not an expert on this and am honestly just trying to see if there are ANY others who have true aplasia. Also...If God has been a major part of the trial (s) you are going through, drop me a line and a testimony. God Bless!


Re:optic nerve hypoplasia



My Daughter Jessica was diagnosed with ONH at 4 months. She is now 14 months and totally blind in her left eye. Drs are hopeful that her right eye is fine. Although MRI scan showed no other problems her development is very slow. She has only just started rolling over. Does anyone know if this is usual for a child with ONH? Doctors are very vague and say "all children develop at different rates!" As a nursery nurse and also mother of 3 year old I am more than aware of this. Still I am very worried about her.
I would be very greatful for any advice.


Re:optic nerve hypoplasia



Hi my name is Kim, I am 25 years old and gave birth to a son, Ashton around 20 months ago. He was diagnosed with ONH very early, since from the beginning he was very ill. Ashton has a misplaced putitary gland and we give him most of his hormones artificialy. He takes hormones for his thyroid, for his natural steriod levels and just resenlty started taking growth hormones. We are followed by the endocrinology department. As for his vision, the othtamologits have told us that he may have little to no vision, his optic nerves are very small. As parents of Ashton we know he can see light, which brings us hope. As for objects, we know he can't. We sometimes sit and wonder why this happened, what we did wrong, but in the end that doesn't matter, what really matters is that Ashton is a very happy baby. It is very hard to see other babies his age develop, crawl, walk or talk at his age, when he is not doing any of that. We see an occupational therapist once a week now and hope it will help. I question myself daily and as time goes on I am having a harder and harder time. Please if anyone can give me some advice, or if I could talk to a parent who is in the same boat as me I would really appricate the support.
Thank you Kim
Kimz_420@hotmail.com


Re:optic nerve hypoplasia



My daughter Zoe was diagnosed with ONH when she was two months old. The doctor told us that she was completely blind or very close. He told us that the best we could every hope for was maybe some awareness of large shapes and light and dark. All of her MRI's and blood tests came back normal. She had physical therapy, vision therapy, occupational therapy and a special educator almost from the begining. My daughter is 5 years old now. She is awesome. Every time she sees the doctor he is amazed with her progress. One month ago we found out that she is no longer considered even legally blind ( 20/200 ) in her better eye. She still has a great deal of trouble with focusing on moving objects or recognizing people when they are moving or in dim light. She will never be able to read normal print or be able to drive but we are so happy with the progress she has made but if her vision had not improved I would be happy with that as well. Everyday in school she has her vision specialist there for an hour to go over all the things she might have missed during the lessons. She also has an occupational therapist come twice a month to help. I am so glad that I had a child like her because sometimes as a adults we miss the joy of inspecting a flower up close or trying to catch a bug so that she can look at it under a magnifer. She has opened my eyes to the beauty of the world because I want her to see as much of it as can.


Re:optic nerve hypoplasia



My 3 year old daughter was diagnosed with ONH in February. Her left eye would drift a little at times, but I had NO clue that she was mostly blind in that eye. Her MRI came back normal, and she has no physical or mental impairments. She wears glasses for protection only because the vision in her right eye is perfect. I have tried patching in the hopes of correcting any lazy eye that might be further complicating her eyesight. I know that she can see colors and light, and maybe a little more if an object is brightly colored. Fortunately, my whole family wears glasses, so she doesn't feel odd and from day one she hasn't tried to take them off. I never thought I would be glad I had to wear glasses! As far as the protection of her good eye, I have entrusted her sight to God and know that He will watch over her always.


Re:optic nerve hypoplasia



My 5 year old daughter has ONH in her left eye. She has some light perception in that eye but that is it. We too have had the MRI-results were good. I take her to Childrens' Hosptial in Phila. which is supposed to be one of the best. Unfortunately, there is nothing that can restore vision for children with ONH. I was devistated to learn when my daughter was 1 that she was blind in her left eye. I thought she just had a lazy eye that could be corrected with surgery. She too has protective glasses and we are considering cosmetic surgery to "straighten" her eye. Any info anyone has on that would be helpful! It is disconcerting, but I have to tell you, my daughter is one of the smartest kids in her class. She knew her ABC's, numbers, shapes, colors, etc by the time she turned 2. We all wish our children were perfect; especially when they ask the eye doctor, "are you gonna fix my bad eye?" which my daughter did at her last appointment. I practically broke down. I tell myself to be grateful that she has vision in one eye. There is so little info about ONH and it leaves parents feeling helpless. This is such a wonderful place to talk with other parents! Thank you!


Re:optic nerve hypoplasia



I am just in total numbness that there are so many children with ONH. I have never even heard of this untill our great grandaughter was suspected of having this when she was five months old and diagnosed at 11 mo. Now just on this site there are 49? We have gotten conflicting advice from each doctor thank goodness our baby outshines each and every one of them she is our greatest joy.


Re:optic nerve hypoplasia



Hello. My name is daniel Me and my wife tara had out beatiful baby girl 1/16/06 and she was diagnosed with ONH and nystagmus at 3 months old. I coulndnt bare it i found out when i was at work and i about lost it!! I was crying so bad i had no idea what my mom was tellin me on the phone so i had to go pick up my wife at work and tell her it was the longest time of my life. Then we had to go do an MRI and see a neuroligist everything came back good there. Now im very happy our baby is not 8 months old and she can see us and smile she is crawling now and happy. Her eyes still shake and move a bit and she has trouble focusing on us from far away but up close she is awsome. I'm So happy with her progress i love her just the way she is. After i found out about her condition it brought me so much closer to her and i cant be without her for over a day hehe. IF anyone needs to talk email me at Tarandaniel@hotmail.com.


Re:optic nerve hypoplasia



My son,Caleb, was diagnosed with ONH when he was 3 months old. He is now turning three. Caleb only has the condition in his left eye. His right eye is as far as we know perfect. He had an MRI at 6 months old and the results were completely normal. He has no other problems than the impaired vision in his left eye. We are still unsure if he sees anything in that left eye or if he is completely blind in it. We are blessed in that his condition is very mild. He will begin wearing glasses with clear lenses to protect his good eye. We just make sure to see his eye doctor once a year.


Re:optic nerve hypoplasia



Hi my 6 month old son has optic nerve hypoplasia i only found out a month ago, and i was devastated! I thought it was the end of the world as im only 17 and i have to cope with such a difficult condition. But i have now learnt to live with the fact my son has this condition, and all i can do is love him and give him my undivided attention.


Re:optic nerve hypoplasia



My grandson was born with optic nerve hypoplaisa. He is going to be two. When we first found out our first thoughts were how are we going to deal with this. We don't know the first thing about raising a blind child. And basically that is what the eye doctor told us. Well there is good news. He is not blind he is walking and talking and moves around everything like a champ. He doesn't see everything but he see's enough to be very independent. If anyone would like to ask me questions I will be glad to try and answer them to the best of my knowledge on this. frusla@cablelynx.com


Re:optic nerve hypoplasia




Hi

I have a three month daughter who responds to light , but does not seem to see me or other toys in front of her. We went to the paediatrician and were told that there is a chance that she has ONH. We are yet to go to the opthalmist.

I would like to know if my baby is , or will be blind , for the rest of her life . If anyone has a similar experience, please share with me.

Kay


Re:optic nerve hypoplasia



My son Tyler is 16 months old and he was diagnosed with ONH when he was about 5 months. He has had 2 MRIs, numerous neruology and endocrinology appointments. He also has a physical therapist, a occupational therapist, and a developmental therpist. He has come such a long way. He crawls now and sits up by himself. He is talking really well. I can't even tell that he has trouble seeing. If anybody needs to talk please e-mail me!

carolanddennis@sbcglobal.net


Re:optic nerve hypoplasia



Hello everyone!
I am a mother of three and my youngest has ONH with Panhypopituitarism. He has just started having siezures and I am left wondering what is next for him. He has his moments like any child, but he still doesn't speak. He eats baby food because he seems to not like the smell or texture of Regular food. If anyone out there has any advice on how to help him like "regular" food please let me know. He is still working on the potty issue as well. He turns 7 tomorrow, and I feel like I have let him down in many ways. I have tried all that I can think of and followed what all of his doctors have said do, and he hasn't made much of an improvement.We were told when he was 4 months old that he would never walk, he would never see and that he would be what the doctor called a "Vegie" all of his life. I showed this doctore that he was wrong, my son does walk and does have some sight enought to get around with. He has seen many eye doctors and he finally was given glasses last year.He is my little angel and I put all of my faith in him. I never had a thought that one of my children would have this many troubles in thier lives. No parent does, but it is up to me to see that he gets the best care possible. I am happy to know there is a place for a parent like me to talk to others about the same issues my son has to be faced with.
Evangelia from TN.


Re:optic nerve hypoplasia



hi, my name is linda. i live in London, England. My dauhgter of 5 months was diagnosed with ONH this week. she's been seen by a paedictican, an opthalomogist, a developmental therapist, health visitor and visually impaired team member. we visit the hospital often. she is not blind, but she has loss of vision in one eye and limited vision the other. i had gestational diabetes. nobody told me of the possible complications. too be honest it was the pregnancy from hell. i don't have a lot to say, i'm still coming to terms with it. will keep you posted as to our progess. her MRI scan is booked for next month


Re:optic nerve hypoplasia



Hello, I find I have some things in common with all of you. My son just turned one and was also diagnosed with ONH at 4 months. He has also had an MRI, been to the neurologist and endocrinologist many times and takes some Thyroid medication. He shows no sign of vision but they always make you wonder, don't they? I want to thank those of you that wrote encouraging entries and my heart goes out to those of you struggling with different heartbreaks. Unfortunately, my son is too young for me to have any great advice but of course I have my concerns. My hardest time has been crossing the 1 year threshold and having to deal with many things I had hoped for him to be doing by now. I can't wait for him to get moving and I know he wants to, too. So, does anyone have great advice on getting my little man to start crawling? Any motivating ideas? E-mail me with suggestions or if you think our kids have some things in common...escoleman@centurytel.net


Re:optic nerve hypoplasia



HELLO ALL, I AM COMING TO YOU AS A PARENT OF A 4 1/2 YO DAUGHTER W/ONH/SOD...THERE IS HOPE OUT THERE WE'VE FOUND A SUPPLEMENT THAT HAS HELPED OUR DAUGHTER GROW (SHE DID NOT GROW AT ALL FOR 2 YRS) AS WELL AS GREATLY IMPROVED HER NYSTAGMUS AND WE BELIEVE REPAIRING HER OPTIC NERVES ACCORDING TO HER EYE DR....WOULD LOVE TO CHAT MORE WITH ANYONE INTERESTED IN GAINING HOPE WHEN YOU'VE EXHAUSTED ALL OTHER OPTIONS. PLEASE CONTACT ME AT: MANNA.MOMMY@YAHOO.COM


Re:optic nerve hypoplasia



hi MY NAME IS ROXANNE AND I AM 21 I HAVE AN 18 MONTH OLD DAUGHTER WHO HAS ONH ,NYSTAGMUS AND PITUATRY AND OTHER HORMONAL PROBLEMS
SHE WAS DIGNOSED AT THREE MONTHS AND IT WAS A BIG BLOW WE WENT TO HOSPITAL BECAUSE SHE WAS COLD AND THE NEXT DAY I WAS SAT DOWN AND ASKED HOW LONG SHE HAD BEEN BLIND FOR.
AT THAT MOMENT MY WORLD FELL APART I THOUGHT THAT WAS IT .......MY LIFE WAS FINISHED.
SHE HAD NASTAGMUS FROM BIRTH BUT BECAUSE SHE WAS MY FIRST I THOUGHT IT WAS HER TRYING TO FIX AND FOLLOW AND SO DID MY GP.
A COUPLE OF MONTHS LATER
SHE HAD A MRI AND ENOCRINE TESTS AND SHE WAS DIAGNOSED WITH ONH .
SHE NOW TAKES DAILY HYDROCORTISONE THREE TIMES A DAY SHE ALSO HAS THROXINE TABLETS BE FORE BREAKFAST . WE ARE CURRENTLY WAITING FOR GLUCAGON TEST.
ALL THAT JARGON OUT THE WAY LET ME TELL YOU THE GOOD POINTS
SHE IS THE HAPPY GO LUCKY BABY YOU WILL EVER MEET. SHE WAKES UP LAUGHING AND GOES TO SLEEP THE SAME
HER WALKING WAS DELAYED SHE STARTED YESTERDAY AND SHE HAS NO PROBLEMS AT ALL SHE RUNS RINGS AROUND ME.
SHE DOES BUMP HERSELF ALOT BUT NORMALLY BECAUSE SHE IS GOING TO FASTALSO EVEN THOUGH HER EYES ARE UNDER DEVEOPED HER OTHER SENSES ARE STRONGER AND ALSO SHE HAS A BETTER MEMORY EVEN THOUGH WE WERE DELT THIS ALL MY CHANCE I WOULDNT SAY IT WAS AS BAD AS I FIRST THOUGHT AND I HAVE NO GUILT OR ILL FEELINGS A BOUT IT .
SHE IS SO SPECIAL AND SHE AMAZES ME EVERY DAY SHE MAY HAVE A DISABILITY BUT IN SO MANY OTHER WAYS SHE IS GIFTED
FOXIEROXIE21HOTMAIL.CO.UK


Re:optic nerve hypoplasia



SORRY!!! That web page is: www.onesmallvoice.org


Re:optic nerve hypoplasia



My little Girl Hailey will be 4 June 30th. We found out 11 days after her third birthday that she had ONH We were devastated! The only indication that we had was a slight weak eye. She had an eye exam done at 11 months and they said she was fine. In fact they said she was just as perfect as we thought she was. They told us to bring her back when she started school. Well at our pediatricians request we saw an opthamoligst named Jane Kersh Hattiesburg, Mississippi. She told us the news and while we were shocked we were also in disbelief. She is so normal. All of her prechoool teachers were so shocked because she was one of the top students. The Lord has been faithful by helping us day to day. Not a day goes by that I do not think about it BUT there is help. A dr. in California is doing a study on this. You need to complete a short 3 or 4 question survey and when he reaches 1500 he will start it. He wants to know what the cause is you can find it at: www.onesmallvoice.com If you have any Q. E-mail me: Bstockstill@charter.net


Re:optic nerve hypoplasia



Hi ya,
My Name is Aleshia I am 23. I have a daughter Kayla She is 4 now (born 11-28-01) Kayla has ONH/SOD She is Blind, all blind in her right eye and maybe light perciption in her leftt eye.She is takeing growth hormone. Kayla dosnt like to eat and she WONT chew so i blend everything but still she doesnt take it 9 times out of 10! Hey days and nights are ALWAYS mixed up! I have tried a routine with her but that hasn't worked eather! Kayla also throws up a lots for no reason well sometimes theres a reason but sometimes not. Kayla is a 12 out of a 1 to 10 on how sensative to textures she is, a hair in her mouth or a tiny pice of fruit in her mouth will cause her to puke. then there are times when she just pukes for no reason. Well i can go on and on but i would love to talk to ther parents that our in the same situation or anyone who has advice PLEASE pass it on!!! I am also very willing to pass on any advice that I can.
Kayla has swiched from a crib to toddler bed in the last year and a half oh my that was HARD for her!!! She used to SWING all the time but she grew out of her infant swing i mean that thing was almost falling apart lol But we got her a dizzy disc and thats her new craze!
Please E-mail i would love to talk with anyone we wants to share or needs advice or even just to connect. My e-mail is Luvmybbs@aim.com


Re:optic nerve hypoplasia



my little boy Rhys was dignosed with ONH at 5 months old and now 8months on we have had no help. I have made myself familiar with the condition and now awaiting a second MRI scan as the first was not clear. i am very scared of the outcome and how to deal with it. i constantly blame myself even though i followed the pregnancy books down to the fine detail. i woud love to her from someone who has been through this as rhys is the only child in my area with this problem(wrexham uk).
we have got him plenty of musical toys but he seems to lose interest very quickly, any advice on this would be very helpful.

thankyou

rhyslloyd30@yahoo.co.uk


Re:optic nerve hypoplasia



Hello everyone!
I came across this website while searching for research currently being done for ONH. I am writing in the hopes that I can provide you with information and encouragement.

My son Kasen, who is now 3, was diagnosed with ONH at 5 weeks of age.He was also diagnosed with hypoglycemia (low blood sugar) and Septo optic dysplasia. He has no vision that we are aware of. He also has dealt with seizures, hormone replacement, and has recently started growth hormone injections. But most importantly, he is a happy otherwise "normal" three year old. I have dealt with neurologists, endocronologists, opthomalagists, and therapists of all kinds. I STRONGLY RECOMMEND DOING AN MRI. If we had not had one done, Kasens full diagnosis would have been delayed. Waiting to diagnose children with these types of conditions can be so damaging to their development. For us, Kasen would have lost 1/5 of his learning potential if we had waited just one year. Please email me if you have any questions about anything! I will try to help or at least point you in the right direction!


Re:optic nerve hypoplasia



Hello everyone...
My name is Michelle and I have a 5 yr old daughter, her name is Alexis. She was diagnosed around the age of 1 when I was told to take her to a pediactric opthamolgist due to the crossing in of her left eye. We reside in ohio.
We tried the eye patch ordeal to try to strengthen her left eye, but it was an emotional toll which didnt help any. She evntually had an MRI done, which it self is very emotional! We found out that she also has a cyst located on the outside of her skull which apparently will not cause her any harm. Thankfully. She sees an endocrinologist who draws har blood to make certain there are not any signs of hormonal abnormalties at the moment and to make sure the Putinary gland is functioning. I have heard so many different diagnosis from different pediactric opthamologist and including school examiners. I am now tring to find out more info on the eye surgery that they can perform to straighten out her eye. Most people say not to do this, but I also am legally blind in my right eye due to an accident from when I was 2 yrs old. I had 8 corneal transplants in which all regected. I had the eye removed in 2000 and now have a prosthetic. I know what is was like going through elementry and all the times I was made fun of. It's hard on a child.
Alexis is a very outgoing, happy youngster who shows few signs of ONH. Its a struggle with her eye glasses. She has a speech problem and a few learning delays, which I still have no proof if they are caused by ONH. She can be very irrritable,hyper,loud, and obnoxious sometimes with her temper tantrums. She is a very, very picky eater and she constantly needs snacks. she does eat healthy though. She doesnt like candy and loves green beans which is a plus, lol. She loves carrots,grapes,apples,oranges,ravioli, and other few foods. This can be extremely difficult around dinner time.
She has a weird sleeping pattern sometimes though i believe thats due to her playing all day and me not being able to keep her up til a certain time and she passes out eventually and then wants to wake up around 12-1 am. Exhausting! I try the noon naps and the not putting the child to bed after 4 for a nap, but they dont work. i dont know anyone else with a child who has ONH. If anyone is on this board from Ohio or Ky then please email me at mseb@peoplepc.com
Sorry so long, but I dont really have anyone to talk to about this, but my fiancee. Some people just want to pin it on bad parenting skills sometimes when they do hear about her. I choose to ignore these small minded people who understand nothing. Hopefully everyone out here can find comfort with what our children are going through and just be there for them and hope for the best.


Re:optic nerve hypoplasia



Hi,
My name is Kitty and I have ONH Optic Nerve Hypoplasia. I can tell you a little about it. Optic Nerve Hypoplasia is when your optic nerve is shrunken or too small. It usually accurs in the oldest, but in my case it occured in the second oldest. Depending on the severity of the optic nerve damage there are different things to look for. ONH is not that hard to deal with. You just have to have things in larger print or in Braille. A child should start learning Braille in kindergarden. The most common adaptive aids used to help with reading would be a Close Circuit Telivision, Monocular, and other braille and large print materials. Brightly colored things are good to have around for the younger ages. Make sure that your child becomes familiar with his surroundings. Don't try to shelter him from other kids. He needs to be able to do things on his own when he is older. There will be times when school gets hard. Your child will most likely be put on an Individual Education Plan IEP. this will help him reach goals. There are schools and outreach programs that you can send your child to whenever he is older.


Re:optic nerve hypoplasia



I am amazed to see so many of you who have been able to have your children diagnosed at such an early age.
I noticed something 'wrong' with my sons right eye when he was a couple months old and immediately began to have him seen by dr's yet it took a full 2 years to get a diagnosis. He is 2 1/2 now and was just diagnosed a couple weeks ago.
I am still in the self educating phase as his specialist is less than forthcomming with info. I am crawling the web searching for morsels of info and articles to assist me on this journey.
He is going to get a ct scan sometime within the next 3 months to determine if he has any other midline brain abnormalities so any tips on sources of info would be greatly appreciated.


Re:optic nerve APLASIA



HI. My name is John and my daughter Hannah will be 6months in a week. Hannah has Bilateral Optic Nerve Aplasia. This means she has no optic nerves and is totally blind. This is rare enough that I am having trouble finding anyone else with this issue. She was also born without a left ear (Microtia/Atresia). My wife and I thatnk God that so far, she has NO other mid-line brain issues. MRI's have shown everything to be fine. She is growing, trying to sit up, and babbling up a storm!!!


Re:optic nerve hypoplasia



Hi...My name is Teresa and I have a healthy beautiful little girl named Chanoah. When she was four months old I was told by a specialist that she had Optic nerve hypoplasia. I had no idea what it was or anything. She is my second child my oldest was 11 and a half when she was born and I wondered if it may be caused my age when I was pregnant with her. I was told that she would never be able to see anything and that I should look into finding a school for the blind. I wouldn't except that. She had her MRI in August and after waiting 4 months to hear the results. We were finally told that her optic nerves are very small but that there was still hope because her putary glade was of good size. She is now 13 months old. Walking everywhere and getting into everything with minumal problems. I was told recenty that their was a doctor at the Cleveland Eye Care Center that was doing a new surgery for the correction of Hypoplasia and was haveing great sucess at it. I was wondering if anyone had any information on this. I'm just thankful everyday that I have my baby girl and that it's not as bad as it could be. If anyone would like to talk further about this please feel free to contact me. Thanks


Re:optic nerve hypoplasia



Hi, my name is Christina and I have a 16 month old daughter who was recently diagnosed with optic nerve hypoplasia. She was referred to an endicrinologist for an MRI which should be coming up shortly. I was just wondering if there was anyone out there who can maybe discuss with me what to expect. I would appreciate any feedback. Thanks


Re:optic nerve hypoplasia



my name is yoli, and im 20. i have a son who is 2 and was diagnosed with ONH/SOD at four months . he went to so many doctors and it was all so scary and hard to deal with. he has very horroble sleep patterns and is starting to throw very bad tantrums for no reason. if anyone has any advice, please help me! yoli_o21@yahoo.com


Re:optic nerve hypoplasia



I just came across this board and read what many of you moms are saying. I've lived a full life with optic nerve hypoplasia and nystagmus. Most of the diagnostic techniques used today weren't even ideas when I was born. Somehow they figured out what was going on. I have visual acuity of 20/2800 in one eye and 20/1500 in the other. I learned braille as a child and to use blindness skills. I got a college education and then married a man who eventually went blind. We raised two normally seeing children, and now I have two normally seeing grandchildren. My suggestion to all of you is that you teach your children to use everything they have - whatever that might be. Every sense and ability can help, even if it's just a little bit . Raising kids isn't easy regardless of their circumstances. You can't ignore the negatives; but place your focus on the positives. It's okay to be blind. Blind people live full lives and function well. I still work 40 hours every week and maintain my own home at age 64. That's pretty much what most folks do, I think. Hang in there, all of you. Love those kids! If you'd like to talk more, you can e-mail nancyj1@cox.net.


Re:optic nerve hypoplasia



Dec 7 2005 my first grand son 3 months old was determend he was born with ONH and Nystagmus its now the 14th and we are on our way we are doing every thing we can for the lil guy. I thought we was the only one's so we had our cry and now its time to go to work. Dr.Borchert at LA childrens hosp has accepted our lil one in his study and so far it has been the greatest thing we could have done. any and all questions or sudgesttion would be great. thank and all of you hang in there.


Re:optic nerve hypoplasia



hi my name is carol schaffer and my son has ONH and nystagmus. he had his MRI yesterday and the results were not what we had hoped. His doctor really didn't tell us much at all! now he has to see a neurologist! if anybody can give me any information please e-mail me!

carol


carolanddennis@sbcglobal.net


Re:optic nerve hypoplasia



My name is Megan Savage I'm 24 and my second daughter was diagnosed with ONH at 2 mths of age. Her vision has increased from seeing nothing to 20/200. She will be 2 in April. She does wear glasses and she has to wear a patch over her right eye(the stronger eye)to help strengthen the left eye. She has bilateral onh. We are now finding out that she also has hormone deficientcies because of the under development. She is in therapy's for vision, physical, and occupational. She also has mild cerebral palsy. The first MRI is hard but with having to get them every 6 months it gets easier.


Re:optic nerve hypoplasia



Hi, my son is 7 months and has recently diagnosed with ONH and Nystagmus. He is scheduled for and MRI and to see a neurologist. I'm very nervous because there seem to be so many possible problems. I would love to talk to anyone who's going through the same thing or been there. Thanks
email: morenita9386@yahoo.com


Re:optic nerve hypoplasia



my son is 8 months old and was recently diagnosed with ONH, and he has to get an MRI and see an endocrinologist. i really don't understand what his visual limits will be later on. if someone could please e-mail me back if they have any information or if they could tell me about their child's vision. THANK YOU! i really hope to hear from somebody soon!

carolanddennis@sbcglobal.net


Re:optic nerve hypoplasia



My daughter was a twin born at 26 weeks. Her twin did not survive. We thought we had her problem outlined when the diagnosis of ONH survaced. Your responces have ben helpful but I would love to learn more. Thanks... Laci and Noan's mom


Re:optic nerve hypoplasia



I am the mother of a 9 yr. old girl with ONH..she was diagnosed at about a year old(and she too had an MRI)...she is totally blind in the left eye and has no resonse to light or dark.She was diagnosed with ADD but now we are going to be going through testing for Agenesis Corpus Collosum as this can go hand in hand with ONH.I am glad to know others have lil' ones who are night owls and that maybe we just need to accept that we must be up LATE(its now 11 pm and she just decided to go take a shower).My daughter does great in school and sometimes scares me with how smart she is.I would love to chat with others who have children with ONH and share stories and support for each other!There's still lots of questions I have and mabe someone out there can help!Thank you! Diane


Re:optic nerve hypoplasia




Dear sexythang02119@yahoo.com
Only her doctor could tell you whether your daughter's sleeping problems are related to vision or caused by something else, but the following parent's groups might prove helpful.
National Association for Parents of Children with Visual Impairments (NAPVI)
• Membership Organization - Consumer
• National Organization

P.O. Box 317
Watertown, MA 02471
http://www.napvi.org
napvi@perkins.org

Phone #1: (617) 972-7441 (Local)
Phone #2: (617) 972-7444 (Fax)
Phone #3: (800) 562-6265 (Toll-Free)

National Federation of the Blind (NFB)
• Membership Organization - Consumer
• National Organization
• National Publisher

1800 Johnson Street
Baltimore, MD 21230-4998
http://www.nfb.org
nfb@nfb.org

Phone #1: (410) 659-9314 (Local)
Phone #2: (410) 685-5653 (Fax)

Within the National Federation of the Blind is The National Organization for Parents of Blind Children.

Hope this helps.


Re:optic nerve hypoplasia



My 6 y/o daughter was diagnosed with ONH when she was just 3 month old. I was only 18 at the time and I was in shock. The doctors told me she might have low vision or none at all. They also performed an MRI and the results were even more unbelievable. She was born without the pituitary gland. Now she is going to school for her second year, and she is in a regular class. I thank god she has no special needs, and she get around just fine. My only problem is getting her to go to sleep early. Any suggestions please feel free to email me at sexythang02119@yahoo.com


Re:optic nerve hypoplasia



Hello everyone,

I have two children with ONH. My daughter who is 14 and a son who is 8. I just wanted to give some encouragement to those of you who are new to this diagnosis.

Our daughter is and has always been in a regular classroom. She is a straight a student and has received a metal for highest GPA for the last 6 years. She plays piano, enjoys reading and horseback riding. Her vision is corrected to about 20/180. My sons vision is about the same but we have more issues with him. He has been diagnosed not oly with ONH but also PDD (Pervasive Developmental Disorder) which is in the autistic spectrum. He is in the public school system and receives speech, OT and vision therapy. He also receives speech, OT and behavioral therapy privately. It has been a long road but he is coming along very nicely. He continues to improve in speech, fine and gross motor skill and behaviorally as well.

Always remember to never give up hope and always remember our kids were given to us because we were choosen from above. With our children sent from above comes stronger faith and richer love.


Re:optic nerve hypoplasia



My nephew turned 4mo on April 3rd. Today first app. to check out his eyes...not quite right....diagnosed with ONH and has Nystagmus. Mother was so upset when doctor told her he would have little if any vision for just movement/light changes, and gave her information to have him placed in blind school later..she refused MRI. (only has medicaid) After reserching this some its vry scarey what could of been shown on the MRI..... I see a lot of post here for children diagnosed this early. I see lots of infor for later...but is there anything we can do to help now? Will not getting MRI be detrimental to his health? He told her to just bring him back in 6mo... Nothing to do now? And if MRI was done and show something....do they do any treatments at this early age?


Re:optic nerve hypoplasia



I have a 5yr old son with ONH(diagnosed @ 4mos.) and he is awesome. He's in kindergarten now and he is reading, writing and growing fine. I wanted to know if he anyone can direct me to some information about correcting the nystagmus. I was against it at first, but the other day my son asked me "why does my eye shake and no one else's eye does?" At that point I realized that I don't want him to endure the teasing about his eye and I would like for him to have the surgery.


Re:optic nerve hypoplasia



I was born with nystagmus. I have been through it all: public school systems, visual aids, driving issues, grants for college, everything. If there are any questions I can answer, please feel free to email me. maghunt82@hotmail.com


Re:optic nerve hypoplasia



My close friend has a daughter with CP and has optic nerve athrophy..... amoughst other things...... i was trying to find some resources for her on how she sees...... they say it is 20/2800. Like i said she has Cp and only has 20% hearing so i would like to show her what she sees to beter help her .... thank you ... in advanced


Re:optic nerve hypoplasia



You and your daughter might want to check out the CareerConnect mentor database. It has blind and visually impaired teachers for her to communicate with – maybe not right now, but someday. It’s at www.afb.org/careerconnect.



Re:optic nerve hypoplasia



whoopeee!!!! There are more of you out there - I thought I was the only one!! My 10 year old daughter Elizabeth has SOD. MRI's, endo, blood tests, hormone therapy - you name it, we've done it. But through it all, she is turning out to be a great kid. Socially well-adjust (just a bit lazy), independent, a good student (in a regular school). It hasnt been easy, but the benefits are paying off. She's talking about becoming a teacher!!! Let me hear from you if you would like iconlin@hotmail.com


Re:optic nerve hypoplasia



HI, my name is mary and i was just wanting to know if anyone had any information about optic nerve hypoplasia...My daughter is 9 months and was diagnosed with ONH when she was 3 months old she went through the whole MRI thing and she has the patches...but they have yet to really say anything about it...There talking about corrective surgery when shes around one to help straighten her eye, but i'm not sure if thats the right thing to do....I was just wondering if anyone new anything that i miht not know...Im just worried and curious...Thanks


Re:optic nerve hypoplasia



Hi, Iam new and would love to talk to some of you about my son, he has the same thing. He is a very bright fellow but I am sure having a time with him at school. His social skills are our biggest problems can any of you help. I would love to hear from some of you.


Re:optic nerve hypoplasia



Hi, My name is Shayla Lovett. I have a three-year-old daughter Rylee who was diagnosed with ONH at 4 months olds and was later discovered to have SOD. She takes thyroid supplements and recently began growth hormone replacement as well. She seems to see better now than she did as an infant but her use of what little sight she has is limited. We are however, like another family and try treat her as if nothing is wrong. With the exception of being less physically and socially active and not eating well she is like most other three year olds. We are currently working to get her potty trained before preschool in August. I would love to talk to anyone to share stories or advice. You can e-mail me at shayla_stone@hotmail.com.


Re:optic nerve hypoplasia



Hi-Looking for help. I am a special ed. teacher with a girl, 7 yrs old with ONH. I am having great difficulty along with her parents getting her to feed herself and swallow food. It is becoming very frustrating for all parties involved. She is able to chew and swallow but refuses to. A swallow study has been done and it checked out fine. Looking forward to any response. Thank you.


Re:optic nerve hypoplasia



Hello ladies. I just came across this site. I had an old catalog for Toys for Visually Impaired children; I wanted to update my copy. Went searching around on this site and found this post.

My son, Zachary is 4 1/2 and has ONH, nystagmus, micropthalamos (smaller than usual eye size) and congenital cataracts in both eyes. He was diagnosed with this when he was 3 months old.

He recently had a doctors appointment where we were told his vision is at 20/200 and will never improve from there. They "officially" classified him Monday as legally blind.

Other than the sounds of all of this, he does quite well. Gets around just find and other than some fine motor skills, seems to be developing normally.

He too has had an MRI, gone to a pediatric endocronologist, the gamet of things. I can understand the fear and frustration.

We have good days and bad days, overall, he is a healthy, happy, and much loved child.

I look forward to getting to have the chance to talk with others out there who are going through and dealing with some of the same issues. Thanks for "listening".


Re:optic nerve hypoplasia



Hi. I'm new to this board and am glad to see it's available. My 10 month old daughter Abby was diagnosed with ONH a few days ago and I'm doing lots of online research to find out more about it. I would love to chat with other mothers of children who have this. I'm so overwhelmed and don't know where to start. I hope to hear back - take care and God Bless!


Re:optic nerve hypoplasia



Thank you both for writing back. I didn't get any responses for a while so I was beginning to think no one was going to write me at all. Aiden is doing good. He can see his toys right in front of him. He is developing fine, holding his bottle and rolling around everywhere. His MRI came back saying that he has a small pituitary gland also, so he is going to see an endocornologist to make sure his hormone levels are ok. Margo, what kinds of things can your son see, and how did you help him growing up, with school work, ect. Everyday is so much fun with him, just seeing what new things he learns to do, and just seeing him laugh and smile. My grandma told me that god knew I could handle it. He has a teacher from foundation for the blind coming to help him develop, and see if he improves or anything. Thank you again for writing, please feel free to write back.


Re:optic nerve hypoplasia



Hi, I am glad to see someone out there that has a kid like mine. My son is now ten. He is a super kid. I remember how tough it was when tony was first diagnosed. I sure had a lot of emotions to deal with. Overwhelming. I just took it one day at a time. It was hard to just look at his eyes for a while. Now I just look and smile. Tony was diagnosed with ONH with nystagmuswhen he was three months old. He had an MRI a few days later. The MRI was normal,Praise God. Tony overcomes obstacles everyday. I could go on about Tony for a while,but I don't want to overwhelm you. Take time off from worrying and love that baby up! I would love to talk to you some more. Let me know if you are interested. Margo


Re:optic nerve hypoplasia



Hello, my son is 3 months old and has cancer in his eyes. He can not see out of his right eye, and we are praying that he will retain some kind of vision in his left eye. My husband and I have good days and bad days. We don't understand Why? and we have no history of this illness. We are also scared of what will happen each day. But, when little Paul manages to smile... it just melts my heart. I have to believe that God knows what he is doing, and like I told my older son Joey. Even little sick babies need a loving family to care for them... and that is why God sent Paul to us... because we have a lot of love to give him. All we can do is take each day at a time.


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