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Raising a child with Optic Nerve Hypoplasia

Hi! My son was recently diagnosed with ONH. He is 7 months old. I have read lots on ONH, but no website has told me how it is to raise a child with ONH. For parents out there with children who have ONH, can you tell me anything about raising them? What challenges will I encounter? Thank you so much!


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Re: Raising a child with Optic Nerve Hypoplasia



Hi all I am 27 and have ONH in my right eye and am completely blind in my right eye. This very rarely affects my day to day life. I can't watch 3D movies which people tell me I'm not missing out on. I had squint surgery when I was 11 to correct the turn I had in my eye but it has been absolutely fine since. If anyone has any questions don't hesitate to email me: jenna_purcell20@hotmail.co.uk


Re: Raising a child with Optic Nerve Hypoplasia



Amanda,

If you haven't already, explore FamilyConnect, AFB's site for parents of children with visual impairments. (FamilyConnect.org) A good place to start browsing is this section for parents whose child was recently diagnosed: http://www.familyconnect.org/info/after-the-diagno....

You can also find us on Facebook.

I'm glad you're reaching out to other parents. This is an incredibly overwhelming time and it is important to grieve and to connect with others.

Shannon


Re: Raising a child with Optic Nerve Hypoplasia



My 1 year old son was just diagnoosed with ONH in his right eye I'm very scared and emotionally wrecked. If anyone who has a little boy that is going through or went through this could email me with tips on how to cope or what to expect id greatly appreciate it! I'm a single mother so I'm completely on my own with this so I'm struggling with it.
Amanda.ireland3@gmail.com


Re: Raising a child with Optic Nerve Hypoplasia



My daughter born with total blindness in one eye (cannot see light), has great vision in the other. She is 24 and working on her Master's Degree, teaching at a local university. She drives well but has never played sports. She never had trouble falling or walking on uneven ground due to depth perception. She tried tennis lessons but did not get the hang of it either because of her sight or because she wasn't good at it, I am unsure. I wish you all well.


Re: Raising a child with Optic Nerve Hypoplasia



I am a 21 year old mother of one. His name is Nicholas and he is 4 months old. I recently found out as of 5/11/17 he has bilateral ONH. All he does is look around, does not track anything and he has absolutely no light perception and I am kind of confused on all of this. A little lost, and a little scared honestly. He is a 18 pound, chunky, happy, extremely healthy baby. All he does is look around, smile, and laugh. But I have noticed here lately he goes through spells where he cries and cries and cries. As a mother, this hurts me and it also worries me. I am not sure why he is crying. I know it is not colic. There is no gas. If I give him Tylenol and bounce/rock him and talk to him it eventually soothes within 30 mins or so. I don't know if it is mirgraines because nothing can touch his head or it makes it worse. He has an MRI on Friday 5/19/17. I am so lost. I know he has to meet with the endo after and they are already wanting him in a blind school, which I know Louisville has a great one... I guess I just need advise. Are the doctor appointments frequent? Is therapy mostly involved? Hormone shots? Is it hard raising a child who has no vision? I am trying to adjust and do the best I can and learn all I can so I can be the best mother and support system to encourage my little fella. I know every case is different.. I am just lost. I know I will probably have to cut back work as well. Are there any moms who work full time with this? Or is it nearly impossible? Anyone who has a child or has ONH please email me; ashleysumpter95@gmail.com
for any advise, questions to answer, and/or just being a friend to help me through or encourage me. it would be greatly appreciated. I have never heard of this until now and I know NO ONE with it. It would be nice having someone to talk to who knows.


Re: Raising a child with Optic Nerve Hypoplasia



I am 29 years old and I have left eye ONH. I have absolutely zero vision in my left eye and can't even really see lights. I've had 2 surgeries to correct a wandering eye. I am willing to answer any questions anyone has about ONH, feel free to ask me anything. I've had many experiences with being blind in my left eye and I feel like I can offer a lot of answers and support. My email is kkourada@charter.net.


Re: Raising a child with Optic Nerve Hypoplasia



So I took my 8 month old to the eye specialist today thinking she only had a wandering eye. I was stunned to find out that her optic nerve in the right eye is barely formed and she can only see lights and shadows, the left eye nerve is smaller than normal, but she seems to see pretty well out of that eye. The doctor didn't even tell me the name of what she actually had, so I had to research what it was. She did tell me the possibility of other problems that can be associated with having ONH, like developmental problems and pituitary issues. She was very matter of fact about it, and I was so shocked I didn't know what questions to really ask. I am scared about what the future could mean for my baby, but I am trying to be optimistic and thankful that she is not fully blind and seems to be developing normally physically and mentally at this point. I would love to hear more stories of people who are living with this condition or with children with this condition. All the what if's are freaking me out right now...email is angelofhope74563@yahoo.com


Re: Raising a child with Optic Nerve Hypoplasia



My daughter has recently been referred to a specialist. She is 15 months old, dad took her to the appointment but I looked at the paperwork and genuinely felt like he slapped a general diagnosis of optic neuropathy. I finally got a call from him a week and a half later and when I asked him if he ruled out ONH...he got defensive and wanted to know why I was asking. I live in San Diego and I am going to look into a second opinion can someone reach out to me? dannawakefield@ymail.com


Re: Raising a child with Optic Nerve Hypoplasia



Hello everyone I'm an 18 yr old young mother raising a 5 month old with hypopituitarism, optic nerve hypoplasia, adrenal insufficiency, nystagmus as well as other things. I made a blog sharing my story & I would love for other parents raising there children with the same kind of deficiencies. It would be nice if you all checked out my blog and shared yalls stories there as well! Thank you! Bless you all! http://wearenotalonee.weebly.com


Re: Raising a child with Optic Nerve Hypoplasia



I'm 25 and have ONHs in my left eye, I was diagnosed when I was 5 but was told it was from birth. I'm legally blind, but I can see movement but I have no perception to how close something is, its nearly impossible to explain. I live a pretty normal life, I go to uni, I work, drive a car and keep an active lifestyle. There are some obvious limitations, but my grandma (she raised me after my parents died at age 4) never told me I couldn't do anything. I'm fairly sure i've always known about my eye. She supported me and gave me every opportunity. I was never told I couldn't do something, I picked what I couldn't do, like tennis for example or basketball or anything with balls. But I danced and swam, I even went on to compete in states for swimming. I probably had a lot more injuries now that I think about it, just because its very easy to misjudge something. My university makes adjustments for me, but if you ask any of my friends they don't think I need it. I wear glasses, as my right eye has to work extra hard, but its about a -1.75. On the plus side, its cheaper for glasses and contacts. If you have any specific questions, feel free to contact me.


Re: Raising a child with Optic Nerve Hypoplasia



I'm am a single Dad, raising a 13 year old boy. He was diagnosed with ONH around 6 months as well. I'll try to keep this short and to the point. There will be times you will want to sit and cry, and cry. Sometimes I do, usually late at night when I have got him to bed and I can look at him, stop and take a deep breath, and think to myself, this little guy has been through so much, and he still wakes up with a smile and gets dressed and he never looks back. That's what helps me get past the sad moments. The headaches he often gets are rough on us both. He will mention once in a while, "Dad, I wish one day I could see out of both eyes..." And those moments are really tough to hold back tears. He's no doubt a fighter, and for having a mother who questioned her love for him at a young age makes the situation that much harder. He can ride a bike, play his video games, shoot his bow and arrow, play catch with the frisbee, and our latest hobby, shooting pellet guns. I believe with his single eye use, it has made him an extra good shot. It's difficult to put myself in his shoes but that's something that gets less and less thought about as he gets older. The main hurdle we are on a day to day basis is something I was told at the beginning that scares me more than anything. On a worst case scenario, he runs a slim, but possible chance of becoming mentally retarded at puberty. That's not something I have mentioned to him and won't until he is older. Just turning 13, I have never been so scared about his situation. Has anyone been told this? I can't even imagine how this would unfold. I try not to think about it but it's slowly creeping up to the front of my mind at his age, and it's scares the hell out of me.


Re: Raising a child with Optic Nerve Hypoplasia



I'm 31 and have OPH in my right eye, I still do have some vision in there but not a lot. I can tell you, that your child will be frustrated a lot, especially if he wants to play sports, but sports are not impossible, even at a high level. I was a 3 year varsity starter on my high school basketball team, NCAA Golfer, and high level curler that almost qualified for US nationals.

I would say the most important thing, is letting them know early on that they will be limited, but most of the limitations can be over come if they work twice as hard as everyone else. Also, be prepared for a lot of injuries if you child is active, because their vision is terrible and if they are anything like me, they will learn that pushing themselves to the brink is the easiest way to get ahead.


Re: Raising a child with Optic Nerve Hypoplasia



cmcginn04 your story seems very similar to our of our daughter. If you could email me I would love to ask you a few questions about her future. Bharney09@yahoo.com


Re: Raising a child with Optic Nerve Hypoplasia



KWVO

Could you please message me at mrgagnon@scarletmail.com so I can discuss with you further. My daughter is also blind in her left eye. She is 5 years old and I would like to know obstacles she will face, but also how to best overcome them. Thank you.


Re: Raising a child with Optic Nerve Hypoplasia




I wish i would have known about this support group when my daughter was diagnosed with ONH... It would have really helped


Re: Raising a child with Optic Nerve Hypoplasia



To the adult that is blind in one eye,do you have a drivers liscence?


Re: Raising a child with Optic Nerve Hypoplasia



My daughter was born with ONH, she is now 13months old. I am a young mother and this is my 1st child and I have no idea who I can turn to to help us out. Her father and I would love to hear from anyone who has any information to help us out with raising her. Please email me: harli_c@yahoo.com
any information will help, please & thank you


Re: Raising a child with Optic Nerve Hypoplasia



I am an adult with ONH, blind in my left eye since birth. Please feel free to ask anything you wish, and I will do my best to answer earnestly.


Re: Raising a child with Optic Nerve Hypoplasia



Hi! My daughter is 5 years old, and was diagnosed with ONH at 6 months old. It's so hard in the beginning. I think I went through every stage of coping with it there is! I still have a hard time sometimes, but for the most part, I love her and everything about her, and I watch her eeryday, and think she's is the strongest person, I have ever met! I mean, I don't know about anybody else, but I would be lost if I had to deal with her daily struggles! But, with that being said, I make her do almost everything (that other children do at her age) by herself! Examples, if she wants a drink, she goes to the fridge and gets it out, I will assist if she needs it, but I don't do it for her! We battle everyday about shoes, or toys, etc, I try to get her to realize that things are harder for her, and she has got to learn that if she takes her shoes off to put them where they go, so that she knows where to find them. I know it may sound harsh, but she is completely blind, and I want her to be on top of things, so hopefully she always feels confident about herself, sense she is different from the other kids in her school. Every child is different, and I have just learned to never treat them any different than you would another child, because it will benefit them so much for later in life! If anyone wants to talk feel free to email me at aeilb235@yahoo.com :)


Re: Raising a child with Optic Nerve Hypoplasia



Hi there I am a mother of a 3 yr old blind little girl, she was diagnosed at 6 months of age with ONH, she currently started preeschool and she's doing great!!!!:) well I just came upon this site looking for support and I found that I can relate to everyone here.:),we both have been through a lot and its hard but I try to keep strong, sometimes idk what to do I feel that she gets frustrated when she's trying to explain something to me when she feels something new (objects, animals ext...), she has been going for hormone deficiency tests, thyroid, mobility, and I've gotten the hang of it but its still overwhelming.. if anyone can give me some tips or want to chat plz email me or write to me through here:) my email edith.bonilla019@gmail.com


Re: Raising a child with Optic Nerve Hypoplasia



My son has SOD and ONH. He is on thyroid medication, growth hormone, Cortef, and has had two eye surgeries. I can remember the day I found out that he had Septo-Optic Dysplasia and how I felt like time stopped for a moment because I didn't understand what I was being told. I just didn't understand. I had never heard of SOD before. But...what a blessing my son has been to me. He is a wonder and I am grateful for his life. We are in the preschool stage now and all that comes with that! IEP's, braille writers, magnifiers, hormone injections every night, rude comments from strangers, people who try to empathize but can't...yeah. I always wonder about how, when, and where I will explain to my son why his eyes are so special. I'm not ready yet and I'm not sure how to approach that. Just taking it day by day and today is today.


Re:Raising a child with Optic Nerve Hypoplasia



Hello, I am a grandma of a completely blind child with SOD. He was diagnosed at 4 months and just turned 8. In California, he had early assistance, with someone coming to the home from 18 months on to help with motor skill development. At 3 he went into a classroom setting with all visually impaired children. At 6 he went into regular elementary school but has been in the same special needs class for 3 years. He is the only blind child in the school and is in a special class with autistic kids. With this syndrome, the medical issues and developmental issues can vary widely. My grandson is miraculously free so far of medical issues but has had substantial developmental issues. He didn't start talking until he was 4 (but hasn't stopped since). It has been extremely difficult for him to learn to make sounds correctly and there is still work to be done. He lacks agility and dexterity such that he cannot do many things like holding a pen/pencil correctly, pedal any kind of bike/toy, play games requiring spatial skills, no puzzles, etc. He is slightly socially off (talks loud, can be repetitive, etc.). Those are the difficulties. He has improved steadily through the years. He is enthusiastic, social with family, can play guessing games, board games (with lots of help), is learning to use a Braille typewriter. We have purchased him "sound" toys all his life, and I think this has been a lifesaver to him. Without any visual simulation, blind children get very bored, and very frustrated. For years now, he carries a small digital recorder -- one that is simple to operate blind. He records EVERYTHING, everywhere he does. This recorder is like "his sight". It comforts him. It entertains him. It helps him learn because he can listen over and over. However, we can't let him take it to school because the other kids hear it playing back. So, lots of sound toys (V-Tech, NatGeo, educational etc.) can be learning aids and entertaining. A lot of them require reading, and those are not helpful, so try them out to see. All music toys are good. A Keyboard/synthesizer is good (and there are inexpensive ones). An mp3 player. Music music music. Our life is different because of him, but he sure has made our family closer, patient, and defenders of the disabled. I wll keep checking this forum. Oh, by the way, Melatonin was a lifesaver. He could not sleep on any kind of schedule for years. This became a problem when he started school. Melatonin was the answer, and we found it ourselves. Now I see it widely recommended. He doesn't have to use it EVERY night now but he used to have to, for a few years. Much blessing and luck to you.


Re:Raising a child with Optic Nerve Hypoplasia



My grandson is now 13. He was born with ONH secondary to SOD Nystagmus, and Panyhypothyroidism. He was diagnoised at 10 days old. He has taken Cortisol, Synthroid and growth hormone injections since he was 2 weeks. He has to take more cortisol when sick or playing more than normal. He is totally blind in one eye and has hand perception in the other eye. He does seem to get around fairly well. Although they have said he is not Autistic but I do see alot of abnormal behaviors in him. He also loves music and has a photstatic memory.


Re:Raising a child with Optic Nerve Hypoplasia



My beautiful granddaughter is eight years old today. She was diagnosed with onh at the age of three months. She is legally blind but can see about five feet in front of her clearly. Her depth perception is poor and high contrast is needed. She has been on thyroid meds since @ 3 years of age and has worn glasses since 2 years of age. Also has nastagmus and strabismus. Also diagnosed with ADHD. Whew! Blood tests have now confirmed very little growth hormone produced in her body and she now needs an MRI and growth hormone injections. We are very nervous about this. Anyone who has a child on the injections, specifically a girl, we are looking for info on what to expect.


Re:Raising a child with Optic Nerve Hypoplasia



When my daughter was 2 months, we noticed something off with her eyes. By 6 months, she was officially diagnosed with ONH. She's now almost 3. It's been hard at times but I think it's probably not much different than raising a sighted child. (I say probably because she is my only child so I haven't raised a sighted child, though I've babysat a lot.) Just know you're not alone and it gets better. Once the doctor visits get less and you get the hang of things it will be easier to deal with. Just rememer, your child can do almost anything a sighted thing can. I have started a blog about my experiences with my own daughter. If you'd like, check it out and ask as many questions as you want. http://raisingablindangel.blogspot.com/


Re:Raising a child with Optic Nerve Hypoplasia



My son Robbie is 3 months old and has been diagnosed with ONH, bilateral primary congenital glaucoma and has a VSD he also has inconsistent feeding some time he will day with only taking 1 to 2 oz of his formula about every 4 to 6hrs and then will take 4 to 6 oz every 2 to 3 hrs he is still gaining weight but not very much height. Has anyone else heard of one baby having all these same issues ? I can't any thing here on the web about a baby having both ONH and Congenital Glaucoma together if anyone can help I would be greatful


Re:Raising a child with Optic Nerve Hypoplasia



My son is also 2 with ONH. He actually also has Septo-Optic Dysplasia with the associated Hydrocephalus and Pan-hypopituitarism. The hydrocephalus was fixed when he was 2 1/2 months old with a VP shunt placement. His pan-hypopituitarism causes him to have to take synthroid and growth hormones on a daily basis and hydrocortisone if he gets sick and injured. With all of these things going on, the biggest unknown is his vision. I can tell you also that it is a case by case situation. My son is very fortunate in that he sees fairly well. Navigates at home and in new surroundings very well. He is a normal two year old. He has hit his milestones...but as I explain to everyone, he hits them on his own time schedule. He sat late, he crawled late and he walked late. But he did all of these things...on his own time schedule. Right now, we are working on getting him to talk. He is very smart and understands a lot, but has yet to effectively communicate back to us. I'm sure that you are in with a Pediatric Ophthalmologist. I have found that they don't give me a lot of information. I'm not sure if you have what we have in our area, but my son is in with the Child Development Services Agency. He has a case worker, who makes referrals for anything my son needs. He has needed a little bit of physical therapy. He is in with the North Carolina Governor Morehead School for the Blind Preschool Program. He has just recently started some speech therapy. All I can really recommend is be an advocate for your child. Take anything they want to give you. Talk with your pediatrician about extra interventions to help your child. I hope that this has helped.


Re:Raising a child with Optic Nerve Hypoplasia



Hello abeautifyulhope,
My child is two and also has ONH. Heartbreaking huh? At least that is what I thought at first... There are a lot of differences from case to case but my best advise is to take it one day at a time. Know your son and his needs and this will guide you better than our generic help. Also, alsways remember you are his advocate so if you know he needs something, fight for it!
Enjoy your son (they grow so fast)!

Here to/for support,
Strong4Val


Re:Raising a child with Optic Nerve Hypoplasia



There is a good resource for you at the AFB web site FamilyConnect:
http://www.familyconnect.org

You will find a very active message board for ONH:
http://www.familyconnect.org/forum/questions-about...

and lots of articles to read. The national parent organization NAPVI is part of the site and can be of assistance to you as well.


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