[blindkid] New member

Thu Oct 22 19:15:45 UTC 2009

Kim,
 I once thought that fear controls everything. Now I know that it only
controls the things that we let it control. The fear of her future is not
something that I am able to control so I end up dealing with grief of her
vision loss, health problems & just everyday life. I am guilty of letting it
get the best of me at times.  I have a blind cousin who I don't see very
often. I am around blind people at her school- teachers & kids alike. I
think that one of her teachers is a member of this group.I see the things
that the blind can do & I want to thank you for letting me know that I am
not alone & that I have people who will help. Is easy to get overwhelmed.
Thats a place that I have been at for a very very long time. I need to
figure out how not to be at that place anymore.
Lesley
On Thu, Oct 22, 2009 at 11:04 AM, Kim Cunningham <kim at gulfimagesphoto.com>wrote:

> Leslie,
> Your grief for your child comes from the place of being scared. I'm sure
> you are like most parents on this list serv who had never been around blind
> people prior to their child's diagnosis. We "assume" what it must be like.
> The best thing for you to do right now is to meet blind adults. Perhaps
> someone can invite you to attend a local NFB chapter meeting in your area.
> By meeting blind adults, you will see how independent and successful blind
> people are. The possibilities for your own child can be endless. Also, there
> are training centers that have programs to teach our children blindness
> skills that carry them through life. These skills are just alternative ways
> to learn without your vision. We are here for you and will help you find
> your way.
> Regards,
> Kim Cunningham
>
> --- On Thu, 10/22/09, LESLEY FISCHER <lesleyfischer at dishmail.net> wrote:
>
>
> From: LESLEY FISCHER <lesleyfischer at dishmail.net>
> Subject: Re: [blindkid] New member
> To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <
> blindkid at nfbnet.org>
> Date: Thursday, October 22, 2009, 9:36 AM
>
>
> Carol,
> I did cancel the appointment this morning. I dont know if it was the right
> thing to do but right now its just to much. I am glad that I found the
> group. I tend to search the Internet hoping to find something that would
> help her or myself.  Sometimes I dont know how to cope with her not only
> going blind but all her complex medical issues. How do you ever except or
> deal with or even become ok with your child going blind? I am looking
> forward to being in this group.
> Thank you
> Lesley
> On Thu, Oct 22, 2009 at 9:08 AM, Carol Castellano <
> carol_castellano at verizon.net> wrote:
>
> > Dear Lesley,
> >
> > It sounds as if you have been through a lot, especially with the negative
> > attitudes on the part of some family members.  No wonder you have not
> "gone
> > public."
> >
> > I hope that we can offer you a new path to walk along with your child.
> >  Since there is no cure and you do not want Kristy to undergo
> experimental
> > treatment, it sounds as if it is time to put the medical route on the
> back
> > burner.  You can keep an eye on it, but not have it be the first line of
> > action.
> >
> > Instead, you can start moving toward Kristy's learning the various skills
> > and tools that will enable her to have a full and independent life.
> These
> > skills and tools will EMPOWER her--not to mention free you up!--and she
> will
> > begin to learn that she is a full human being, not a freak, with the
> > potential to get a good education, have a career of her choice, and have
> > normal relationships with others.
> >
> > I am sorry to hear that you have such little family support, but I KNOW
> > that we in this organization are like family to one another because we
> > support each other and UNDERSTAND.  I am glad you found us and hope you
> will
> > take advantage of the ideas and experience you will find here.  I'm
> looking
> > forward to hearing how Kristy is progressing on the road to independence!
> >
> > Warm wishes,
> >
> > Carol
> >
> > Carol Castellano, President
> > National Organization of Parents of Blind Children
> > 973-377-0976
> > carol_castellano at verizon.net
> > www.nfb.org/nopbc
> >
> >
> >  At 08:20 AM 10/22/2009, you wrote:
> >
> >>  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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> >> > <
> >> >
> >>
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> >> > >
> >> > ______________________________________________
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> >>
> >>
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