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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

ONH/SOD

HELLO EVERYONE,

MY NAME IS DEBORAH AND I LIVE IN THE UK. I HAVE A 5 YEAR OLD CALLED HARRY, WHO WAS BORN WITH OPTIC NERVE HYPOPLASIA. HE WAS ABOUT 4 MONTHS OLD WHEN WE WAS DIAGNOSED WITH THIS. A BRAIN SCAN LATER REVEALED THAT HE HAD AN ABNORMAL PITUITARY GLAND, SO THE GOAL POSTS CHANGED AGAIN, AND WE WERE TOLD HE THEN HAD SEPTO OPTIC DYSPLASIA. HE IS ALSO GROWTH HORMONE DEFICIENT, AND HAS HAD SOME DELAYS WITH HIS SPEECH, BUT HE HAS CAUGHT UP NOW, BLESS HIM, AND IS AHEAD OF HIS PEERS.
HE IS A BRAILLIST AND IS TAKING TO THIS LIKE A DUCK TO WATER, I AM THE ONE HAVING THE PROBLEM REMEMBERING EVERYTHING, AND KEEP A LITTLE AHEAD OF HIM. HE IS ALSO LEARNING TO USE A LONG CANE TO HELP HIM WITH HIS MOBILITY.
HE IS AN ENCHANTING LITTLE BOY, WITH A WICKED SENSE OF HUMOUR, AND IS ALWAYS READY WITH A SMILE FOR EVERYONE. I WOULD LOVE TO HEAR FROM OTHER PARENTS WITH VISUALLY IMPAIRED/BLIND CHILDREN AND SEE HOW THINGS ARE DONE IN AMERICA AND HOPEFULLY LEARN SOME NEW THINGS.
I HAVE ALSO STARTED AN ON-LINE SUPPORT GROUP AND I WOULD LOVE TO HAVE YOU ON BOARD, IF YOU ARE INTERESTED PLEASE LET ME KNOW, WE COULD DO WITH MORE MEMBERS, ESPECIALLY OUTSIDE THE UK.
I LOOK FORWARD TO HEARING FROM YOU ALL VERY SOON.
KINDEST REGARDS
DEBORAH
UK

There are currently 20 replies

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Re:ONH/SOD



kaidencesma... Hi,my son is 3 & I cannot get him to chew food. He will, however, chew on his toys, using front & back teeth. Any suggestions? Also, his pupils stay dilated most of the time. Did you ever experience this with your child?
Stephanie @ srnoyola@ymail.com


Re:ONH/SOD



I am the mother of the cutest little 7 year old named Kaidence. She was diagnosed with onh/sod when she was 7 months old. We first noticed the nystagmus at four months old. At first the doctors told us she was completely blind, then we were send to get her hearning checked to see if she was deaf as well. it turns out that she is not deaf nor completely blind. She has decent functional vision and has no trouble navigating her surroundings. Turns out, her symptoms have manifested themselves as Autism. She is extremely talented with her art and patterning. She is non verbal and has started assisted technology to help her communicate. When she was younger she puked all the time and couldn't tolerate cows milk. We put her on goats milk and she flourished and didn't need to be tube fed. she still has eating issues. I know that part of the problem is sensory- textures. For the past three years she has eaten only raviolli, which have to be cut just the right way. Breakfast, lunch and dinner. She hasn't eaten anything else! we are just lucky she is eating. so far she hasn't need any growth hormones or had any seizures( Fingers crossed) She loves school and will read books for hours. Since her diagnosis I have earned my teaching certification and work in her school. I loved reading all of the stories on this message board and it is really amazing how different our children are and comforting to be able to feel and share the love we have for our children. They are all unique and spectacular. The most important thing we can do four our children is Love them. Love them. Love them


Re:ONH/SOD



Hello, My name is Xanath, I have a 3yr old little boy, When he was born he was dix, with ONH. And is leg. blind, And cant see through both eyes, He isnt eattin anything but babyfood, And I still have to feed him, He wont touch anything that has to do with food...Its a struggle day in and day out, Also still on the bottle and not potty trained. Any Help??


Re:ONH/SOD



Hello everyone. My name is Kelly. My 8 month old daughter Gloria was just diagnosed with ONH last Thursday. I'm scared to death. We have to go for an MRI of her brain this Thursday and I have no idea what is in our future. If anyone can let me know of there experiences or what to kind of expect please email me.


Re:ONH/SOD



Hi my name is Carol and I have a 2 1/2 year old son, Tyler, that was diagnosed with ONH when he was 5 months old. He is has every kind of therapist you can think of but when he turns 3 he will no longer get those services and will put put into an early education program with the public school disrtict. This scares me! If anybody has gone through this transition process and can give me any kind of information I would greatly appreciate it. Thank you.


Re:ONH/SOD



Hi,
My name is Donna and I have a grandson who was diagnosed with ONH. I am very happy to find this board as I think I have VERY GOOD news for all of you. Cameron is 18 months old and he was diagnosed about a year ago. We think he sees 5-6 inches from his face. We recently found out about a case study in china that uses umbilical cord stem cells and a nerve growth factor to treat and hopefully cure ONH. Two children have started the treatment and are already seeing progress. One, an 8 year old girl, has been treated for about a month. Her mother is reporting that her vision has increased from 6 cm to 2 meters!! Her vision is reportedly clear at this distance. The second child is a girl of 5 who was totally blind from birth, not even seeing light and dark. Her mother reports that after 2 stem cell treatments and 2 weeks of therapy, she seems to be seeing things on the television. You can read her story at www.stemcellschina.com under the blog "Rylea's OHN blog". My grandson, Cameron and his parents will be going to China on August 6th. They will be there for about 25 days and he will undergo 4 SCT's. He will also receive OT, PT, chinese massage, acupuncture and other therapies as needed. We are very hopeful that this will increase his vision. The news coming about the other children is extremely encouraging. If you would like to see the video on Cameron and his trip, it can be found at this website. Also, if you would like to make a donation to help Cameron and his family it may be done at any Bank of America under the Cameron Lee Petersen Trust. PLEASE take the time to read Rylea's blog at the stemcellschina website. If you would like to e-mail me my address is dvangorp@comcast.net. I can answer a lot of your questions. Cameron is not walking or crawling, he is VERY picky about what he eats, taking only his bottle, but otherwise his development is on target. He also has a growth hormone deficiency, so he is small for his age. We are hoping that the stem cell treatments will also address the pitutary issue. I am looking forward to hearing from others with concerns and questions.
http://www.heraldtribune.com/article/2007706210952...


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Hello everyone. I Have a 4month old beautiful great-neice who was diagnosed with ONH. I am doing all I can to help my nephew with her. The drs say it will be a few years before we know to what extent her vision loss will be. They say she reacts to light.... but very little. Could someone please share with me the approximate stages of development and at what ages?? I know she will be behind normal develpoment.... but I was wondering... how far.... Thanks for your responses. melindaallen@webster.k12.ms.us


Re:ONH/SOD



Hi. I have a almost 4 year old whom we found out has ONH a few months ago. He has had two eye muscle surgeries, and we just thought it was a lazy eye and have been patching for 2 years now. His endro blood work came back normal so far. His vision in his one eye is prettty good, but the other eye is 20/800. My question is, does behavior problems go along with ONH? I dont know if I have a typical 3 year old or if his behavior is due to something he cant control. He trows terrible tantrums, hits, spits, ect... He can be so happy one moment, and then turn into a little monster if something doesnt go his way. Anyone have any advice or know if this could be related to the ONH. Thanks!mythreesons@csonline.net


Re:ONH/SOD



My son is 2 yrs old and was diagnosed in the womb with ONH. He is doing great and sweet as ever. If anyone could e-mail me and let me know when children with ONH or VI start to walk that would be great. He is in PT/OT now and he tends to have a problem with balance. If anyone has any ideas on how to get him more motivated to walk please e-mail me.
jencody23@aol.com


Re:ONH/SOD



Hi, my daughter Sonora's eyes started to shake at around 5 months of age. We brought her into the optiomologist who diagnosed her with OHN, the next day we had an MRI that said her optic nerves were the correct size as far as they could tell. So she did not have OHN. However her eyes were still shaking, she does not reach for toys and appears to have some vision but not much. She is now developmentally behind, however we are now told that her vision could catch up and could just be delayed. I have no idea if that means she will have some more vision later or if she will be fully sighted. In the last couple of days the nystagmus (eyes shaking) has almost stopped. We went to a Neurologist who said he would think the first diagnosis of ONH is correct. Now I am very confused. Has anyone heard of this or any similar things. Any information would be helpful. You can e-mail me at wendt.masonry@gmail.com

Kalynn


Re:ONH/SOD



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:ONH/SOD



hello, i am not a parent, but i do have ONH, and the other things associated with it. i am legally blind, have growth hormaone dificiency, and an underactive thyroid and petuitary gland. if you would like to e mail me you can at typeingtornado16@hotmail.com


Re:ONH/SOD



My name is Jen and I have a 2 yr old son (Cody) with ONH and I would like to know the stages of development as far as crawling and walking and other motor/speech skills. I would also love to chat with anyone to discuss how they got their infant to explore more or to be more independent. Please Email me at jbattaglia@nc.rr.com
Thank you for your time.


Re:ONH/SOD



Hi Georgia,

I can understand your anguishe. Harry was 4/5 months old when we were told he had ONH, a later brain scan revealed SOD. Harry has no vision, and at the moment we are not even sure if he has any light or dark perception, like you we wont know exactly until he understands properly, and can tell us himself.

I was told by our ophthalmologist that children develop their adult vision around the age of 2 - 2.1/2, and it is possible that at this point there may be a very very slight improvement. However, Harry has no vision at all, so there was nothing to improve on anyway.

Harry is 5 years old now and attends main stream school, and he is very very happy, and is known by everyone in his school, he is so popular. Especially with the girls. LOL.

If I can help you in any way, or if you just want to chat some more, please feel free to contact me. My email address is debghope@hotmail.com.

I also have an online parent support group if you would be interested in chatting to other parents who have VI children.

Hope to hear from you soon
Kindest regards
Debbie


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Hi my name is georgia & I have a beautiful 9 month old doughter named Sofia. Sofia was born with one pupil lower then the other so we booked an appointmnet at a specialist to check it out. The specialist told us that our doughter has ONH. At first we were shocked and devastated. I thought my sweetheart would never see. I am pleased to say she is 9 months now & doing great! It looks like the issue is with her one eye. She sees well form her left eye reaches for toys, started crawling sits up watches tv. We are waiting until she gros a little before we can tell how much she will be able to see. Can anyone help me undersatnd her condition. The doctor said she will most likely be able to see large print but we don't know the extent of her vision until she is a little older. I love my sweetheart to pices & just wnat to help her.Any advsiece is much appreciated.


Re:ONH/SOD



HI LYNNE,

I WROTE YOU A LONG REPLY AND PRESSED THE WRONG KEY AND LOST IT. LOL.

MY EMAIL ADDRESS IS debghope@hotmail.com, YOU CAN CONTACT ME DIRECT AND WE CAN CHAT MORE.

I ALSO HAVE A ONLINE PARENT SUPPORT GROUP ON MSN, THAT YOU MAY BE INTERESTED IN JOINING, YOU CAN CHAT TO MORE PARENTS WHO ARE IN SIMILAR SITUATIONS MAYBE IT MAY HELPFUL.

HEAR FROM YOU SOON
KINDEST REGARDS
DEBBIE XX


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My 5 month old Grandson was dx w/ ONH. Yesterday we were told he is blind in his left eye. The rt. eye is ok. Ped/Endro said all pituitary test are normal so far. Ped Neuro said he appears to be doing fine, but wants to do an MRI at 10 months of age. The Ped. Optho did a large unpublished study of ONH. She feels the MRI will only confirm what we know already and suggested we skip doing it. She also does not believe a dx of ONH automatically creates a assumption that he will need early intervention.
I have a child with Down Syndrome that suffered Optic Nerve damage from the chemo she received while being tx for leukemia. She also tx my 16 yr old who was born w/bi-lateral cataracts. My daughter, who is Mom to Joey, had also been tx by her for reoccurring sty problems. So, I have years experience w/this doc and she is excellent in her field.
I do need some feed back on exp of other parents. The doc would like Joey to get use to eye glasses now. She wants to protect his good eye from injury with non rx safety lenses. She feels the sooner he gets accustomed to wearing them the better off he will be. Numerous friends and family have all balked at using glasses on him. They feel he is more likely to injure himself w/eye glasses. One friend said, "You know he will be made fun of, they will call him goggle eyes." She had this experience w/her son years ago. The name calling fear will not stop us from using eye glasses on him, but I was wondering if any other children were put in eyeglasses for protection? I would also like your input on the MRI and getting an early intervention evaluation. I trust 100% she will tell us to do what she feels is best, but that does not mean we will, pardon the pun, follow blindly everything she says. Thank you and sorry for the long post.
Lynne, Grandma to Joey


Re:ONH/SOD



My son Rafi as ONH and corpus callosum dysgenesis. Unfortunately his *&(&*()*( ophthalmologist, while he has known about the ONH since Rafi was tiny, never bothered to mention it or refer for services until last summer when Rafi clearly failed the vision screenings at school and at the GP (annual checkup). I am furious, as we have lost a lot of time.

Raf has been struggling though keeping up with grade level, and it turns out that much of the problem is probably vision related. He has so far had a developmental test of visual perception and is going to be haing a comprehesive assessment now. I have had great encouragement from the State Services for the Blind here in Minnesota, that once w can deal with visual issues he will probably show that he is much brighter than any of the professionals have ever suspected. I know for sure that when we put his spelling on the computer in big type and they started letting him do his tests on the computer he went from mediocre to perfect scores. Also now that he does his math in large format he does very well, and has many fewer problems with focus.

Additional ideas would be welcome, can contact me directly at legalcorgi@msn.com

Jane in MN


Re:ONH/SOD



hello there,

thank you for your reply. the group is on MSN, so if you have a hotmail account you can email me at debghope@hotmail.com and i can send you an invitation for membership, alternatively i can send you further instructions via your email address.

Hope to hear from you soon.

PS. I am going to a conference on the 4th February about ONH/SOD I would be happy to forward you any information or email you with any further findings.

kindest regards
Debbie


Re:ONH/SOD



Hello,We have a grandaughter who was born with out optic nerves in her right eye and just a sliver in her left eye. She is our most precious child and she does everything that any other baby can do. how can we get to your.web site


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