Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

Anybody know about Optic Nerve Hypoplasia?

badktty007badktty007
in Special Needs
Just learned that our son has this and need info and experience. His optic nerve is underdeveloped in possibly both eyes. Hoping for some answers about MRI's and anesthesia too.
Report Reply to Post

Re: Anybody know about Optic Nerve Hypoplasia?

  • Assembly_ReqdAssembly_Reqd member

    I do not have much info or experience with ONH but our DS has Macular Hypoplasia. Learning my baby would have problems seeing was a hard pill to swallow. And not knowing the extent of it until he could tell us what he can or cannot see is another load of suckage right on top. I am sending you virtual (((hugs))).

    As far as MRI's and anesthesia goes, my only advice is to ask for a pediatric anethesiologist. You other option is to ask if you can try and get your baby to fall asleep on his own before they try drugs. The knocking of the MRI machine is kind of loud so I am not sure they would go for it...They will probably also give him ear plugs or phones to wear.

    WAY 2 Cool 4 School


    image
    Report Reply
  • Loading the player...
  • miss_chelzea@hotmail.commiss_chelzea@hotmail.com

     I unfortunately can't give any advice about MRI's or anesthesia but my husband has Optic Nerve Hypoplasia and if you want to ask us any questions feel free to pm me! 

    Report Reply
  • MummyGruetzieMummyGruetzie member
    We haven't been told that DD has hypoplasia, but she is severely vision impaired (and completely deaf). We know that there is nerve damage. I apologize for being stupid, but ONH play into MRIs or anesthesia? . . . We've just had both done in the past two days. 
    Warning No formatter is installed for the format bbhtml
    Report Reply
  • brysladybryslady

     

    My daughter has it in both eyes as well as other things.

    Here is a link to an old post about ONH. 

    https://community.thebump.com/cs/ks/forums/29111188/ShowThread.aspx

    I am sorry you are facing this.  Good for you for following your gut.

    Please let me know if I can help.  You can email me at kelseybryannacan (at) gmail.com

    Report Reply
  • badktty007badktty007
    Thank you all for your help and support. MummyG- our DS has an MRI and has to be under anesthesia during. Good luck with your LO.
    Report Reply
  • lmorganlmorgan
    ME!!!  My little lady has ONH.  We've done the MRI and the endocrinology and all that fun stuff.  Let me just say right off the bat that if you need anything please email me.  I have a couple of email buddies that are moms I met that have little ones that have gone through all this junk.  PRICELESS-  I have asked every crazy question you can imagine.  I would love to give this resource back to you if you want it.  You can email me at lmorgan4523@hotmail.com anytime.  I remember being in the initial shock of this situation and being devestated.  Addison is 10 months now and is doing awesome.  We have some struggles.........but its a million times better than I thought it would be.  I think its the mommy side that panics and worries about the worst.  Feel free to page me on here or email me ANY questions you have.  By the way, I see that you are in Montana.  I am in Post Falls Idaho.  It would be fabulous to have another family to hang with that has a little one with similar disability:)  Anyways, Im getting ahead of myself, feel free to ask anything.  I've met with just about every doctor I can get my hands on.  I work in a genetic clinic myself so I've been really picking the brains of the geneticists here too.  Good luck, hope to hear from you.  Lisa
    Report Reply
  • badktty007badktty007
    lmorgan- Thank you, and I emailed you.
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"