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2 year old just diagnosed with RP

Posted by helpmesee on 10/16/2009 10:35:04 PM.

My 2 year old daughter was just diagnosed with retinitis punctata albescens yesterday.  We are going to be doing an ERG soon.  I knew in my gut that she had this (or something like it) since she was about 6 months old.  She is completely night blind (I think, the test will tell us) but she cannot see anything from twilight on.  She is also VERY farsighted.  Her glasses her extremely thick.  

I need help.  We have bought her flashlight after flashlight for use at night but none of them are strong enough for her.  She still trips and lands into things, not just little things, things like a chair or a bed.  

Also, what do we do for her future? Should she learn braille?  Her opthamologist suggested a vision therapist.  She seems fine now during the day but I know things will progress.  

How can I help her make the most out of life with this??

There are currently 6 replies.

      

  • 1 . Re: 2 year old just diagnosed with RP
    Posted by Casper on 10/17/2009

    You will feel better with time. Try the flashlights with
    the L.E.D. lights. They seem to be brighter. You could
    also try a CNIB cane. They come with a ball at the end,
    very easy to use. Teach her to get around in the dark. That way she will feel comfortable at that time.
    I agree with your doctor. Get a Visual Aid teacher. Go
    with the Braille. Also get her on the computer now, teach
    her to type as soon as you can. Trust me everything will
    work out. She will have great future. I hope that helps a
    little.



  • 2 . Re: 2 year old just diagnosed with RP
    Posted by Judith Lesner on 10/20/2009

    Agree totally with the above post. Think starting use of cane in imperative. Do you have access to orientation and mobility services for her?
    Judith



  • 3 . Re: 2 year old just diagnosed with RP
    Posted by helpmesee on 01/29/2010

    Update- we have had the ERG and it is much more progressed than we or the doctor hoped. The doctor thinks she will be using a guide dog in 10-20 years. We will have another check up in June and by then she will be able to see how fast this is progressing. Pretty stressful. We will be seeing a low-vision specialist with teh Storm Eye Institute when she turns 4. Apparently they will not see her sooner than 4. The LED flashlight helps some, not much but we ended up buying her a 5 light lamp and letting her sleep with two bulbs on at night. This way it is not too bright to encourage her to play but she can make her way out of the room to go to the bathroom at night without landing on her face or running into the doorframe. We will be starting with a cane soon. She is pretty computer savvy already (loves it). I guess we are now really embarking on this journey. Thanks for all the wonderful help!

    (This post was edited by the author on 01/29/2010 )



  • 4 . Re: 2 year old just diagnosed with RP
    Posted by had030307 on 06/08/2010

    I feel like I can relate a little to what you are going through. Our daughter now 3 was diagnosed with RP at 2 as well. My husband also has it and so we were not totally shocked, but each day is a new adventure. She too sleeps with her closet light on and the closet doors all the way open. We have taught her (because of her dad too) that she needs to put things up when she is through with them and not leave them out in the walkways were someone may fall over them. If things are moved we take a stroll through the house so that they both know the changes before maneuvering around the house. One of my saving graces has been to use the "clock method". I can't quite use this with my daughter yet, but it works with my husband and may help with your daughter as she gets older. For example, if I want to warn my husband that there is a low hanging limb while walking in the park. I will tell him 2:00 and he knows that means up and to the right of where he is currently at. I also count the steps for my daughter and husband since they seem to run together for a person with RP. Try this website if you haven't heard of it: www.fightblindness.org. We also installed flourescent lights in our house where ever possible. They seem to help us.



  • 5 . Re: 2 year old just diagnosed with RP
    Posted by momathu on 08/01/2010

    Does your child have Nystagmus?
    how was the test in June?



  • 6 . Re: 2 year old just diagnosed with RP
    Posted by jnaert08 on 01/19/2011

    It will definitely become easier to deal with, I think, in time as you learn more. For me, that was the key to dealing with things. I'm quite happy. I may bump into things a little more, or trip over a few things, and may come across as "clumsy" but I just shrug it off and move on with life. :)

    I have a blog that I'm starting: http://livingwithrp.wordpress.com/

    I encourage you to check it out. :) Remember, as cliche as it is for individuals with RP "There is light at the end of the tunnel."


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