[blindkid] New member

Nancy Eldomiatti nancyteld at msn.com
Wed Oct 21 20:44:46 UTC 2009


Hello Lesley,

What bright light test are you referring to, exactly?  
Your comment about the bright light testing is news to me and frankly, quite disturbing.  I say that because my two oldest children, ages 16 and 13 also have Bardet-Biedl and the retinal deterioration that goes with it.  We've always taken them to the University of MN to have their eye exams and they've always done some form of bright light tests on them - with great difficulty too, mind you.

There is a special test that they do to "confirm", so to speak, whether they actually have the retinal degeneration.  For my daughter, who was about 3 or 4 years old at the time, they used a special appliance to hold open her eyes and she was given a mild sedative to allow her to hold still during the process.  It was definitely one of the more horrible experiences of my life just to be standing outside the door and listening to her screams. (Her dad was with her and I had her baby brother with me at the time.) In the end, they never were able to get any results from the test anyway and we decided no information obtained from the test was worth going through that experience again.  Interestingly, however, over 10 years later she did end up having the test done, confirmed the fact that she was going blind and actually she was legally blind within the same year.

Do you mind my asking who your doctor was last year? I would like to ask him or her some more questions. 
Sorry, Leslie, that I actually don't have any advice to give you though.

Nancy

From: LESLEY FISCHER<mailto:lesleyfischer at dishmail.net> 
  To: NFBnet Blind Kid Mailing List,(for parents of blind children)<mailto:blindkid at nfbnet.org> 
  Sent: Wednesday, October 21, 2009 7:31 AM
  Subject: [blindkid] New member


  Hello,
  I am new to the group. I have a 13 year old daughter with Bardet-Biedl
  Syndrome. We live in MN. Kristy is legally blind. I have a question
  regarding tests that the eye doctor wants to do on her eyes due to her fast
  vision loss compared to last year. She has RP from the syndrome & we were
  told by a different doctor last year not to allow any test to be done on her
  eyes that a bright light is shined into them because it speeds up the RP
  leading to faster deterioration of what vision she has left. Can anyone help
  with advise regarding this?
  Thanks
  Lesley
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