Raising a child with Optic Nerve Hypoplasia
Posted by abeautifulhope on 10/13/2010 at 12:48 PM
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!
There are currently 12 replies
Re:Raising a child with Optic Nerve HypoplasiaPosted by ScottAFBFamilyConnect on 11/17/2010 at 12:12 PM
There is a good resource for you at the AFB web site FamilyConnect. You will find a very active message board for ONH 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.
Re:Raising a child with Optic Nerve HypoplasiaPosted by strong4Val on 1/22/2011 at 6:13 PM
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,
Re:Raising a child with Optic Nerve HypoplasiaPosted by cmcginn04 on 2/2/2011 at 2:46 PM
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 HypoplasiaPosted by RobbiesMommy on 4/3/2011 at 9:27 PM
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 HypoplasiaPosted by nightriderbrat on 6/19/2011 at 12:48 AM
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 HypoplasiaPosted by Vickchick0 on 9/10/2011 at 10:34 AM
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 HypoplasiaPosted by firstname.lastname@example.org on 9/12/2011 at 4:18 PM
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 HypoplasiaPosted by calgrandma on 10/1/2011 at 1:19 PM
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 HypoplasiaPosted by alyheyden on 10/14/2011 at 1:07 AM
I noticed at about 2 months of age my son wasn't tracking toys nor making eye contact when breastfeeding. He also had nystagmus which caught my attention so I took him to the ER. He was transferred to a Children's hospital where he was later diagnosed with bilateral optic nerve hypoplasia and nystagmus. He's 4 months old now and it's all becoming real. I'm just beside myself and crying all the time. I feel like he gets frusterated because he's trying to see and he can't. I'm finding it so hard to stay strong for him when I know that's what I need to be. I'm currently living in South Korea becuse my husband is in the military. This makes everything a little more challenging especially with the language barrier at the hospital we go to. If anyone has any words of encouragement or ideas for support I would be so grateful. My email is email@example.com.
Re: Raising a child with Optic Nerve HypoplasiaPosted by SODMommy on 4/23/2012 at 8:45 PM
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 HypoplasiaPosted by Evelyn's Mommy on 5/2/2012 at 3:45 AM
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 firstname.lastname@example.org
Re: Raising a child with Optic Nerve HypoplasiaPosted by ElainaBaugh1 on 11/9/2012 at 4:45 PM
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 email@example.com :)
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