[stephieb4]

Our daughter is 3, diagnosed with bilateral Optic hypoplasia with nystagmus.. MRI ruled out Septio Optic dysplasia. Looking for anyone with real life experience to share with..

Thanks..

[Abdulina]

I was looking on this board as I haven't for quite awhile and so this post that caught my eye. I have a daughter hoem a month and recently dx'd w/ SOD. She is getting an MRI for definitive confirmation. There is SO much w/ this disorder I'm finding out and not good stuff. Also, it is extremely rare I am told. Lots of hormone stuff affected. Would love to chat more w/ you as we are just getting started w/ all this stuff. I wish you all the best.

take care,

[pwheatle]

Septo optic dysplagia is definitely not a rare disorder so there should be lots of info about it. The pituitary is missing so hormone replacement is necessary. I don't know anything about optic hypoplasia

[stephieb4]

Our daughter is now 4, we haven't had the issues with the hormones although she is monitored annually with the endocrinologist. We do however have her weighed and height checked often with her pediatrician to catch it should it become a problem. We also have been fortunate not to be showing significant delays. Her vision originally was estimated at 20/300, but with patching and vision therapy through EI her eyesight has improved. Our daughter also has a feeding disorder and also some sensory issues I believe are due to her limited vision and anxieties of what she can't see.

Good luck with all the testing, PM me if you would like to chat more..

Stephie

[truegirl]

in Sept 05' and she was, in Guatemala, diagnosed with bi-lateral cataracts, nystagmus, strabismus, and halfway through the process there was a possiblity of SOD. We got her home and had her tested. She does not have cataracts at all, she has nystagmus, strabismus, and Optic Nerve Hypo Aplasia, aka ONH. We do have an appt with an endocronologist for hormone testing to see if she does have SOD but the Optho is pretty confident she doesn't.

Mia has light perception, and limited perphrial vision in her right eye. That we know of. She does not have any problems walking freely around the home and in most places she is comfortable.

What kind of questions do you have specifically? I would be happy to talk to you from one new mom to ONH to another.

You can contact me at nicholetrue@yahoo.com and you are welcome to check on my blog as well to see how Mia is doing. I suggest going to the very beginning when we were just learning about what she can and cannot do.

She is a normal 3 year old that just happens to be legally blind. Her love of music says it all..

Good Luck
Nichole

[truegirl]

OOPSS Yet again I did not look at the original date...

Sorry
Nichole

[skyrain30]

I am new and was just flipping through old posts. My son is 13 and has optic nerve hypoplasia. He has no vision. He needs growth hormone, Cortef and meds for his thyroid. He is also autistic. Be happy to answer any questions you have.

[Abdulina]

Summer, does your son have SOD then or ONH? Just curious. Also, if ONH, does vision decline? I'm told it should stay stable by opthalmologist but noticing recently my daughter(8) really can't see. I can hold up 4 fingers and if they are more than a foot away, she can't see them. She's got another appt. in September so we'll see what has happened. Waiting to do the atropine drops until summer is over. --sun. She has to literally sit right in front of the TV which drives the rest of the family bonkers. She has other issues as well but her hormonal panel came back clean. Endo was shocked. So were we. She has ONH/ FAS/ FTT/ SI/ radial articulation/ devel. delayed/ holes in heart/ etc. She has not grown in almost 3 years now though we've only had her for 8 months. They think she may have a form of dwarfism. Could the delayed growth be from the ONH by chance? Also, does your son have any dyslexia/ dysgraphia type of issues? Its' looking like our daughter may be dyslexic but trying to determine if this is possibly ONH related.

Any insight or suggestions you can provide would be wonderful. our daughter is a puzzle we are trying to put together--LOL. Just figured out she has H-pylori. So hoping that may help. Of course, at the end of treatment now and no difference. I thank you for writing on here. Any suggsetions from your son's point of view? Do you think later in life she'd benefit from a walking cane? She is really, really cautious now of where she steps but you can tell she doesn't see all that well. Just want to know the best possible way to help her. The glasses, well, she can take them or leave them so I really don't think they're helping all that much. Got to run.

Thanks for being willing to answer our questions. Have a great weekend.

Take care,

[Lylac]

Our new daughter is DX'd with Bilateral open lipped schizencephaly, SOD, Diabetes Insipidus and a few other things.

We can't wait to bring her home, and get the ball rolling with OUR docs to know the extent of things.