[blindkid] New member
Richard Holloway
rholloway at gopbc.org
Thu Oct 22 18:13:52 UTC 2009
Lesley,
When our blind daughter was born we had no idea there was even the
slightest concern with her vision (or anything else). By the time she
was six months old, she was entirely without vision. It seemed like
the end of the world and those were probably the worst, or at least
most stressful times of my life but slowly things got better. Kendra
is Seven now and in in most every way, a typical, happy first grader.
The issues which at first seemed overwhelming-- probably even
impossible to deal with, are now routine and as odd as this will
probably sound right now, we don't give many of them much thought at
all. Im so used to making certain Kendra grabs her cane on the way out
that sometimes I try and put a cane in my sighted three-year-old's
hands as we leave the house. Everyone in the family is used to telling
her who is speaking and what is going on that is visual. Her little
brother was, by age two, not only telling his sister who he was, but
even the Cat. ("Hi cat, it's me, R.J.")
Know that you are among friends who understand here and that things
really will get better over time!
Richard
On Oct 22, 2009, at 10:36 AM, LESLEY FISCHER wrote:
> 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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