Special Needs

Any ONH/ DeMorsier's Syndrome Moms?

Hi, I will be honest and say I have not lurked much on this board so I really hope I don't offend anyone by posting right away.

?My daughter was just diagnosed with Optic Nerve Hypoplasia. We're waiting to have an MRI to see if she has DeMorsier's. She has extremely little vision in one of her eyes, and the MRI will tell us if she has any brain damage. I'm just feeling incredibly overwhelmed and responsible for all her problems.

We begin OT with Easter Seals next week and I have no idea what to expect. ?

Re: Any ONH/ DeMorsier's Syndrome Moms?

  • just wanted to say i hope you get good test results and that OT goes well.
    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
  • Nate does not have ONH but he does have Macular hypoplasia which may affect his ability to see fine detail. We are not sure how it will affect his ability to read.

    I think there are a couple of other moms on here with kiddos that have ONH. It is great that you are having an MRI to rule out any other issues. It looks like she is on track for her physical milestones. She is a great sitter and smiler!!!

    It is fine to post here. No one else wanted to join this Special Needs Club either, so you will find tons of support.

    I would recommend getting in touch with your local School for the Blind. You may be eligible for some vision services through your early intervention program. Don't let the "blind" in the title turn you off. There are wonderful teachers there able to show you how to best support your LO and her visual issues so she can be the best that she can be.

    WAY 2 Cool 4 School

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  • Welcome - no one will be offended at all, this board about as pleasant a place to post as it can be (if you ignore the reasons we're all posting here, at least!).

    Good luck with the MRI results and your OT.  Early intervention has been incredibly helpful for DD, so good for you for getting that OT started!! 

  • My daughter has ONH but not septo-optic dysplasia.

    There is a board on yahoo groups for ONH/SOD that may be helpful to you.

    Functional vision can improve with ONH.  Definitely ask for a teacher of the visually impaired (TVI) through early intervention.  They will be able to help you with the resources and techniques you can do with your DD.

    Your daughter is adorable!

  • Thank you everyone for making me feel welcome... And bryslady thanks for the headsup about Yahoo... I'm off to go find it now.
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