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vision impaired

Does anyone here have a child who is visually impaired?

I am fairly certain that my daughter (3 mos. old) has some vision problems. At birth she had an examination by an ophthalmologist who said that she had possible optic nerve hypoplasia.  He scheduled a followup exam for her at 6 mos. because up until then her eyes will still be maturing.    I am wondering now if I should see if he can see her sooner than 6 mos. though.  She is not focusing very well on faces and she does not track objects.  She does respond to light (ie: going into a brightly lit room, turning the light on etc.), but she has been seen by OT and an early intervention team both of whom suspect she has a vision problem. 

My question is:  When did you notice that your child had vision difficulties?  What were the signs that you saw in your child indicating that there was a problem?  At what point did you talk to a doctor and/or receive a diagnosis?  Any suggestions for what we should do?

Thanks

Re: vision impaired

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    announcer's voice....."This is a job for....dun, dun, dahhhh....Special Needs FAQ's!"

    If you look about 4-5 posts down from yours there is an FAQ link that has most of your questions under "Vision Issues".....feel free to ask more!

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    My child doesn't have a visual impairment but has a genetic growth disorder (I know it seems completely unrelated) BUT our family has been helped tremendously by an organization called The Magic Foundation. They offer support, education and resources for families with children who have a variety of disorders. My son has Russell Silver Syndrome which is one of the conditions they help with but they ALSO help with Optic Nerve Hypoplasia. I would *highly* recommend getting in touch with someone at MAGIC- even if it isn't ONH the teams they have working to offer support and suggestions to families are fantastic. I am confident they would be able to answer a lot of your early diagnosing questions, help you figure out the next step and get you in touch with some families who are going through similar things. Here is a link to their ONH/SOD page where there is more info and a link and info to get in touch with Bree who is their ONH parent advocate coordinator. HTH!

     

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

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    My daughter has thinned retinas and is extremely nearsighted.  She got her glasses prescribed at 3 months.  I actually called the opthamology (I can never spell that correctly...) department at 2.5 months for the exact reasons you mentioned.  The only difference is that my daughter did seem to react to light.  I would call and let them know your concerns.  If they don't think you should be seen, they will tell you.  I am so thankful that I called when I did because DD had basically gone 3 months without really seeing me. 

     However, I can tell you the exact date, time, etc. that my daughter saw me for the first time.  What an amazing gift!

     

    Good luck and I am happy to answer any more questions that you have!

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    imagelaurding:

    My daughter has thinned retinas and is extremely nearsighted.  She got her glasses prescribed at 3 months.  I actually called the opthamology (I can never spell that correctly...) department at 2.5 months for the exact reasons you mentioned.  The only difference is that my daughter did seem to react to light.  I would call and let them know your concerns.  If they don't think you should be seen, they will tell you.  I am so thankful that I called when I did because DD had basically gone 3 months without really seeing me. 

     However, I can tell you the exact date, time, etc. that my daughter saw me for the first time.  What an amazing gift!

    Good luck and I am happy to answer any more questions that you have!

    That's aweme!!

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    imagegoldenleaves:
    imagelaurding:

    My daughter has thinned retinas and is extremely nearsighted.  She got her glasses prescribed at 3 months.  I actually called the opthamology (I can never spell that correctly...) department at 2.5 months for the exact reasons you mentioned.  The only difference is that my daughter did seem to react to light.  I would call and let them know your concerns.  If they don't think you should be seen, they will tell you.  I am so thankful that I called when I did because DD had basically gone 3 months without really seeing me. 

     However, I can tell you the exact date, time, etc. that my daughter saw me for the first time.  What an amazing gift!

    Good luck and I am happy to answer any more questions that you have!

    That's aweme!!

    I follow your blog and love reading about your sweet daughter Lauren!  Our daughters are close in age and I appreciate hearing about her!  Thanks for sharing a little bit of your life with other parents!

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    My son who is 20 monts old was born with a long list of visual issues.  He had bilateral cataracts, colobomas & now has glaucoma in both eyes.  At birth the doctors said he might be blind, but he can see! :-)

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