[blindkid] New member

[lindashalm at aol.com]

Hello Lesley, I also have a child with LMBBS.  He had the ERG done at age 8, when we were searching for a diagnosis.  that test was pretty awful.  I would question the point of any more tests.  You have your diagnosis.  We still have eye exams about every 18 months to check for other problems.  I don't know if that checking is considered a "bright light test", but we have done what the doctors feel they need to do. 

I know in traditional RP, the loss of vision is very individual.  With LMBBS diagnosis seems to come at an earlier age.    I can tell you that in our case there was substantial loss between age 8 and 13.   My son also has a heart condition and has to wear a holter monitor on occasion.  when he was 7 he could read the LCD time on the monitor strapped to his waist.  When he was 13 he held it up to his eyes and still couldn't read it.  That measured the loss to me like a slap in the face, but to him it was "oh, well...."

Are you familiar with the listserve for LMBBS?  There is a doctor Richard Lewis of Baylor University, who has been working for nearly 20 years on LMBBS.  He probably can advise you as to this question about the testing.  If you aren't familiar with the LMBBS listserve you can reach me off line at  lindashalm at aol.com  and I'll try to connect you.

by the way, my son is now 26 and in Minneapolis for training with BLIND, INC.

Linda, NJ 


-----Original Message-----
From: Nancy Eldomiatti <nancyteld at msn.com>
Sent: Wed, Oct 21, 2009 4:44 pm
Subject: Re: [blindkid] New member



Hello Lesley,
What bright light test are you referring to, exactly?  
our comment about the bright light testing is news to me and frankly, quite 
isturbing.  I say that because my two oldest children, ages 16 and 13 also have 
ardet-Biedl and the retinal deterioration that goes with it.  We've always 
aken them to the University of MN to have their eye exams and they've always 
one some form of bright light tests on them - with great difficulty too, mind 
ou.
There is a special test that they do to "confirm", so to speak, whether they 
ctually have the retinal degeneration.  For my daughter, who was about 3 or 4 
ears old at the time, they used a special appliance to hold open her eyes and 
he was given a mild sedative to allow her to hold still during the process.  It 
as definitely one of the more horrible experiences of my life just to be 
tanding outside the door and listening to her screams. (Her dad was with her 
nd I had her baby brother with me at the time.) In the end, they never were 
ble to get any results from the test anyway and we decided no information 
btained from the test was worth going through that experience again.  
nterestingly, however, over 10 years later she did end up having the test done, 
onfirmed the fact that she was going blind and actually she was legally blind 
ithin the same year.
Do you mind my asking who your doctor was last year? I would like to ask him or 
er some more questions. 
orry, 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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