[T&B'sMommy]

My son was born with this. He is almost completely blind, he can see bright lights though (the sun). Just wondering if anyone else's children had this.

[Admin-pattyandthemoos]

Brandon has optic nerve hypoplasia which is similar but not as severe. At one point I thought he might have septo-optic dysplasia. He has some similar characteristics as kids with SOD but he sees fairly well now. How old is your son?

[T&B'sMommy]

Brandon has optic nerve hypoplasia which is similar but not as severe. At one point I thought he might have septo-optic dysplasia. He has some similar characteristics as kids with SOD but he sees fairly well now. How old is your son?[/b]

My son is 2 1/2. How old is yours? Did his eyes just gradually get better? Tayden's doctor said that there was nothing they could do to help his eye sight.

[Admin-pattyandthemoos]

Well Brandon only has optic nerve hypoplasia in the one eye and the other eye was borderline. He is 4 now. I know that he didn't track anything at all until he was about nine months and that he had really noticable nystagmus as a baby. Now I notice the nystagmus just slightly now and then. I think he has some coordination issues because of his vision but I think he sees fine now. They also told me there wasn't much they could do about his vision because it was his optic nerve.

Did your son have failure to thrive or any other growth or feeding issues as a baby?

[fiefer87]

Hi I'm new here and your question about children born with SOD promted me to write. My daughter was born with septo optic dysplasia. She is now 5 years old and getting ready for knidergarten. Alexis has optic nerve hypoplasia in both eyes, but does have some functional vision. She sees shapes, colors. large objects, but does need a cane to navigate new surroundings. She is also growth hormone deficient, cortisol deficient, and thyroid deficient. She has the absent septum pellicidum also characteristic of septo optic dysplasia. She does have some severe developmental delays and does not function an a developmentally normal 5 year old level. She is delayed in all areas, cognitive, gross motor, fine motor, speech, and needs an orientation and mobility instructor to learn how to safely navigate areas. If you have any questions at all, please do not hesitate to contact me.

[Admin-pattyandthemoos]

Hi I'm new here and your question about children born with SOD promted me to write. My daughter was born with septo optic dysplasia. She is now 5 years old and getting ready for knidergarten. Alexis has optic nerve hypoplasia in both eyes, but does have some functional vision. She sees shapes, colors. large objects, but does need a cane to navigate new surroundings. She is also growth hormone deficient, cortisol deficient, and thyroid deficient. She has the absent septum pellicidum also characteristic of septo optic dysplasia. She does have some severe developmental delays and does not function an a developmentally normal 5 year old level. She is delayed in all areas, cognitive, gross motor, fine motor, speech, and needs an orientation and mobility instructor to learn how to safely navigate areas. If you have any questions at all, please do not hesitate to contact me.[/b]

Thanks for posting! I have been posting on the vision board for a long time and there have only been a handful of moms that have joined with ONH or SOD so it is really nice having you on the board. I feel like I can really relate with you girls even though Brandon's vision is not that bad. I have read a lot about SOD and Brandon has a lot of the characteristics but he doesn't have any midline problesm such as absent septum pellicidum. We had a couple MRIs done to rule this out. I still think that some of his autism symptoms are related.

[fiefer87]

I agree that some of the autistic symptoms are related. In speaking with Alexis's vision therapist who has had experience with children with SOD and ONH, she has said that these children have many behaviors that mimic autism. She went to a conference held by the Commision for the Blind in San Diego I think it was and in this conference, they discussed both SOD and ONH. That is were she learned that many of the autistic tendencies they exhibit are related to the diagnosis. She gave me a review article that discusses a center based program that has serviced over 10 children with ONH or SOD and this group catalogued the most common characteristics displayed in almost every child with this diagnosis. I am not sure how to get this article to you, I downloaded it from the university's library where I work, so if you have any suggestions on how to send it to you, I would appreciate it. Briefly, these are some of the characteristics that are listed:

Moderate to severe delays in information processing
Extreme tactual and auditory defensiveness
Difficulty with transitions
Rigid adherence to routine
Strong interest in rhythms and music
Restricted food preferences and eating problems related to an aversion to textured
foods
Avoidance of social interaction and engagement
Profound distractibility
Mild hypotonia (low muscle tone)—in many children
Developmental delays in motor functioning
Lack of initiative in exploring their environments
Atypical language development
Enjoyment of swinging
Lack of spontaneity in verbal interactions

My duaghter exhibits many of these and we are still earning to cope and handle them. This article would be an excellent resource for when they reach school age or even if they are already in school as it addresses many ways to actively engage the children and ways to deal with behaviors associated with some of these characteristics. Hope this helps.

[chocoholic8]

In speaking with Alexis's vision therapist who has had experience with children with SOD and ONH, she has said that these children have many behaviors that mimic autism.

I have a 2-yr old boy who was diagnosed with SOD. I was reading your list of autistic mimicking symptoms and my son does just about all of them. I was worried that he was autism and your post was very eye opening. My question is, if they are mimicking autism, are they autistic or will these symptoms go away as they get older?

[nvr.4.gtn]

welcome to the board ladies. I'm Kaytee, mom to Nichole (no vision problems) and Avery (my vision baby)
We are not dealign with everything you are so I have not posted sooner. We are very mild in comparrison. Avery had congenital cataracts, we don't know her vision outcome but we are hopeful. She wears contacts and just ordered her first pair of glasses so we will see how this goes She can see enough that she will not be a brail reader or need a cane.

[sblades19]

Hi, I have posted here before, but not often. My daughter was diagnosed with LCA (Leber's Congenital Amourosis) in April 2010...she was just shy of 3. She has very functional vision but we are unsure of what she can or can't see. She is inconsistant...like she has good days then not so good days. So far, there is nothing that can be done for her...it is a retinal degenerative disease and all has to do with her rods and cones not working as they should. She is going to preschool at the Florida School for the Deaf and the Blind and we have seen so much progress since she has been attending. But I wanted to add that she didn't start to track things til she was 12 months +...developmentally, she is right one physically and cognitively.
She is being introduced to braille, uses a cain for unfamiliar territory, has a mobility coach, an occupational therapist, and lots of one-on-one...when she was first diagnosed with congential nystagmus at 2 months, they told us there was nothing we could do and didn't give us any resources. She went 3 years without any assistance, only what we did for her. Which, it turns out, her teachers were very amazed she hadn't had intervention before. Makes me a lil mommy proud! Anyway, your babies qualify for all sorta of aides and people can come to your house to help you and your baby! I didn't know this. And there are clinical trials going on all the time to help find cures/treatments. Look into Foundation Fighting Blindness...they have lots of vision walks coming up and they are raising money for our kids! Anyway, sorry for the rant! LOL ((HUGS))

[amomentcherished]

Originally Posted by fiefer87

Hi I'm new here and your question about children born with SOD promted me to write. My daughter was born with septo optic dysplasia. She is now 5 years old and getting ready for knidergarten. Alexis has optic nerve hypoplasia in both eyes, but does have some functional vision. She sees shapes, colors. large objects, but does need a cane to navigate new surroundings. She is also growth hormone deficient, cortisol deficient, and thyroid deficient. She has the absent septum pellicidum also characteristic of septo optic dysplasia. She does have some severe developmental delays and does not function an a developmentally normal 5 year old level. She is delayed in all areas, cognitive, gross motor, fine motor, speech, and needs an orientation and mobility instructor to learn how to safely navigate areas. If you have any questions at all, please do not hesitate to contact me.

Hi~ I know this post is old, and I am hoping you will still see this. My husband and I adopted a 15 month old sweet heart of a boy from Ethiopia 3 months ago. We just found out that he has been diagnosed with SOD and that he is missing his septum pellucidum. The doctor told us "it's not a big deal. You don't need to do anything, and do not worry about it." Of course I have been googling, and we are very frustrated and not sure what to do. It seems as if Jamesy (our son) needs some immediate medical attention. What is your take?? He also has nystagmus but seems to be able to see really well.
Thanks!
~Tiffany
www[dot]amomentcherished[dot]com

[cpstuart72]

I just had my first child in September. She was diagnosed with S.O.D when she was two weeks old. I have questions about what to except as she gets older and the doctors all just tell me it depends. I'd love to talk to someone who has been through this with their child and can give me more of an idea of what to expect and how to help her as she grows. my email is number 1 cutie72 @ yahoo. com. Please email me if you think you can help.

[Admin-pattyandthemoos]

Have you been to this site?

Focus Families, Septo-optic dysplasia, Optic nerve hypoplasia

They have an email group that I used to be part of. It was very helpful. Brandon has ONH (Not SOD). His vision seems fine now and I only notice his nystagmus once in a while if I'm really looking for it. Nobody else would probably catch it. It used to be very profound when he was an infant and he had significant developmental delays but he's doing quite well now.

[v.craig87]

Originally Posted by amomentcherished

Hi~ I know this post is old, and I am hoping you will still see this. My husband and I adopted a 15 month old sweet heart of a boy from Ethiopia 3 months ago. We just found out that he has been diagnosed with SOD and that he is missing his septum pellucidum. The doctor told us "it's not a big deal. You don't need to do anything, and do not worry about it." Of course I have been googling, and we are very frustrated and not sure what to do. It seems as if Jamesy (our son) needs some immediate medical attention. What is your take?? He also has nystagmus but seems to be able to see really well.
Thanks!
~Tiffany
www[dot]amomentcherished[dot]com

YES... immediate attention is crucial. my daughter was diagnosed with SOD at 2 months. and the Dr.s told me that the sooner they find all her medical needs the better off she'll be in the long run. She is growth hormone, thryoid, and Cortisol deficient. the cortisol is a huge one, and can potentially leads to death if she was not getting her hormones. That Dr. needs to go back to school. my daughter was diagnosed and treated in Seattle CHildrens Hospital. it is one of the top ten hospitals in the united states. good luck in the futre.

[mlmp930]

My daughter was diagnosed with SOD at her one month check up. She has no vision. She is now two and has many issues and delays. She has yet to crawl, walk, or talk. She does not sleep all night and will only eat pureed food being fed to her. We also have trouble sitting her places, e.g., chairs, sofas, strollers, and buggies. She has both PT and OT once a week, but I'm having a hard time finding childcare for her. Have any other mothers experienced these issues? I have many questions if anyone has any advice.

[AJsNana1215]

I just joined this sight today. It is nice to find a sight where we can share our experiences. I have a 17 month old granddaughter that was diagnosed with SOD when she was 4 months old. We are not sure what she can see, but it appears that she does have some light perception (she sometimes squints at the sun). She also has a pituitary problem. She has to take thyroid medication and growth hormone injections each day. She currently has occupational therapy, physical therapy and speech therapy. She currently lives with my husband and I as her mother is not responsible enough to take care of her. It is sad, but the baby (Anmariah) is very happy and healthy. She does not seem to have any problems learning things, but she is not walking or crawling yet. Her therapists are working with her on it.

[AJsNana1215]

Dear mlmp930,
I understand your frustration with this. My granddaughter was diagnosed at 4 months old. Has your daughter had an MRI to see if there are any other problems that may be causing these delays? Sometimes there are other issues that cause developmental problems. My granddaughter does not crawl or walk on her own yet, however with her therapists she has made great progress the past few months. She can pull herself up, but does not have balance yet. She says a few words, but mostly she just jibber jabbers. She has a stubborn streak and mostly says words when she wants to, not on demand. Anmariah had trouble sleeping as well and I spoke with her pediatrican about giving her Melatonin drops. He said that it was a wonderful thing to do, he gives it to his children and even takes it himself. It is all natural and it will help her get into a sleep pattern. It takes a little time, but it does work. Anmariah used to sleep only 3 hours at a time, now she sleeps 6-7 hours at night and takes one to two 3 hour naps a day. As for the sitting, you just have to keep working with her. She has to build up her core muscles, and neck muscles. We still have problems at times with Anmariah holding her head up. She wants to hold it down. This causes the muscles in her neck and shoulders to be tense and we have to massage them and put warm compresses on them. I don't have trouble with childcare because I stay at home with her. We are fortunate that there is a Deaf and Blind school in our area that helps us with all her therapies and gives us help with her needs. She will go there when she is 3 or 4 and they can start teaching her more things. You could check into that, ask your pediatrician or if she has an eye specialist they migh be able to refer you.