[blindkid] New member

Thu Oct 22 12:20:27 UTC 2009

Hello Linda,
 The RP doctor at mayo stated avoid any bright light shined into her eyes. I
would have to look at that eye report to remember who the specialist was.
Her first eye doctor- Dr. Hoberger at mayo had retired & now she has Dr.
Mohony & Dr. Izzy. There is 2 other specialist she had seen but I forgot
their names-sorry.She sees to many doctors its so hard to keep them all
straight. Dr. Hoberger in the beginning told us to always get transition
lenses in her glasses to protect her eyes from the light. Now the one
specialist told us to avoid shining any lights into her eyes. She has a
electroretinogram Nov. 5th at mayo. I dont know if I want to have to put
through that. My thinking is we already know she has BBS & have known since
she was 3 years old. There is no cure for her eye disease as of right now
anyway & this test will be another terrible experience for her. I have been
thinking of canceling. What good will it do to get it done? One of her
Doctors said that there is a experimental treatment that Dr. Izzy is doing
with people at Mayo that has a good chance of at least slowing down the RP.
I dont want her to be a guinea pig. She has been put through enough already.
What would you do? Get the test or not? I dont know what to do.....She has
been so traumatized from all her doctor visits she will not allow any doctor
to even look at her private area & she has to be put under just like for
surgery in order for them to look. I was in contact with Dr. Lewis when
Kristy was younger & I also went to NIH & spent a week there with Leslie
Biesecker & did testing when Kristy was 3. I have been on my own with all of
this & sometimes I feel like my world is consumed with Kristy. She is my
world & when there are very few times she is not with me I feel like I am
missing something. I worry all the time what kind of life she will have when
she is older & it scares the hell out of me what would happen to her if I
would die. She has always been my responsibility & I have always handled
everything that involves her. I know for a fact her dad would be so lost if
he had to take care of her without me. If  for some odd reason we would both
die somehow & she would be left behind we dont have anyone who would be able
to take her & handle everything that goes along with her. What do you do
with a child like her? My family has never been involved much & his family
told me from the day she was born how she belongs in the national enquirer
magazine because she is a freak & what is wrong with her does not run on
"their side" of the family & what is wrong with her is my fault. What a
bunch of BS. His mom & dad have never been involved with Kristy & they have
not seen her for over 6+ years. So I sit here wondering if I should put her
through any more testing if its not going to help her....
Thanks
Lesley

On Wed, Oct 21, 2009 at 10:34 PM, <lindashalm at aol.com> wrote:

>
> 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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