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Optic Nerve Hypoplasia help

lcportolcporto member
in Special Needs

We just got my son's MRI back from the opthalomologist and he has been diagnosed with ONH. The doctors have said he has a normal brain and normal development (My son was born at 37 weeks at 5lbs 8oz, is now 6 months old and at 17lbs) and meeting his milestones...We have done Occupational Therapy with concerns about not grabbing at items, saw a Neurologist and she doesnt seem to think anything is wrong with his nerve development aside from the optic nerve, now are waiting to see the Endocrineologist and Genetic....All the doctors keep saying only time will tell with his vision, the opthalomologist says he can see, im not confident about how well and it just drives me crazy thinking about it...

Can anyone give any advise or help?

THANKS

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Re: Optic Nerve Hypoplasia help

  • KYmama9286KYmama9286 member

    No personal experience with ONH but I just wanted to direct you to the Magic Foundation-- not sure if you have ever heard of it but its an AMAZING organization! Our son has Russell-Silver Syndrome which is one of the conditions they focus on (as well as ONH) and they have been a huge support for us. It was started by a mom who wanted the best for her child with special needs and it has grown into a quite large support system. I would definitely recommend getting into contact with their office. They will be able to hook you up with some other families (possibly families in your direct area) who have kids with ONH, offer support and info about different treatment protocols, give suggestions and help with insurance stuff, etc. They also have a yearly convention in Chicago where they bring in specialists to talk about new research, info about different diagnosis, free screenings with specialists, info about insurance stuff, what to expect for the future for your child, etc. We went last year and it was GREAT! Anyhow here is a link to the MAGIC website (specifically their page for ONH) HTH!

     https://www.magicfoundation.org/www/docs/101/septo-optic-dysplasia-optic-nerve-hypoplasia

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  • lauraandleelauraandlee
    My son's condition is frequently seen with SOD/ONH, and like PP I would highly recommend getting in touch with MAGIC.  They also have a FB group and I believe some pages/groups specifically for SOD/ONH. 
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  • pandabear12178pandabear12178

    Aside from my daughters main diagnosis, she also has Septic-optic dysplasia. We were told she would have poor vision or would be blind. The opthomologist said everything looks great with her optc nerves and she can track. Im not saying it may not always be this way, but I also learned to take what the doctors say with a grain of salt. They never know. Arianna doesnt grab things yet either, shes only 3 months old though. She sees things, just isnt interested. Maybe this is the case for you LO? I havnt heard of MAGIC before so thank you girls!

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  • pandabear12178pandabear12178
    Also, we have to see the Endocrinologist next week. The septum pellucidum that is absent controls hormones. We also see the geneticists next month. Very frustrating...I know. If you need to talk feel free to PM me :)
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  • lmorganlmorgan
    My daughter has ONH and is blind in one eye.  Im not on this site as often as I used to be so please contact me at lmorgan4523@hotmail.com if you have ANY questions!  I absolute remember feelings so overwhelmed by the million different outcomes they tell you about.  My little girl also had a normal MRI with just the very small optic nerve.  Ive been through it all.  The endocrinology appointments, the opthalmologist, the geneticists you name it.  My little girl is doing awesome and I hardly remember it anymore until a doctors appt pops up on my phone:)  Like I said, PLEASE ask me any questions you have.  I remember asking a million questions and would happy to repay the favor to someone needing the info.  If I don't hear from you good luck and know that your kiddo will be okay.  Lisa
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  • lcportolcporto member
    Wow, thank you! i stumbled across the website while I was googling a while back, but did not look too much into it...im going to have to get back to it. Thanks for bringing that to my attetnion!
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  • lcportolcporto member

    Actually I had never heard of the Magic Foundation either, I stumbled across it while googling and my endocrinologist recently told us about it.

    But my son is 6 months old and like you said he does not grab for objects yet. If you put them on his chest or near where he can feel them he will grab at them and bring them close. But nothing yet with just setting something in front of him, we are seeing some progress with objects that light up.

    So far everything with his hormones are normal, we actually went this morning so they could redo the cortisol, waiting on the results, fingers crossed!

    There are just so many grey areas....

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  • lcportolcporto member
    I forgot to mention that our Occupational Therapist told us to check out "the little room" videos on youtube. and im willing to try anything so we will be making it this weekend. it looks fun for baby too.
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  • lcportolcporto member

    FYI The "Little Room" was designed by Dr. Lilli Nielsen for visually impaired babies and young children

     

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