[blindkid] New member

Thu Oct 22 19:01:10 UTC 2009

Linda,
 Your son is about an hour from me. We put Kristy in the Minnesota State
Academy for the Blind in Faribault when she was at the end of her first
grade year. There they do teach these  kids things that they may need as
they get older but sometimes I feel that she is not pushed hard enough. Most
of the time I feel that they just want to do as little as possible with her
& have the same attitude as her doctors do because she has a delay from her
syndrome. They think that she should be learning more daily functional
skills & not so much academic skills. It feels like because she is delayed
they gave up on pushing her to learn. It could be that its just the way I
see things because I see the doctors side & I see the schools side. Most of
the time neither one agrees with each other as everyone has different
opinions. Fighting this myself is tiring. When we were at her eye
appointment her doctor left the room & asked another doctor to come in. This
guy acted like we were not even there & talked right through us & he just
talked to her regular eye doctor. That made me mad & I let one of the
assistance know I was mad & I even told her clinic manager. She said thats
normal for this doctor to be like that to everyone & I told her I didnt want
to see someone that acted like that. Of course she went on how to over look
his crappy bedside manner & have him do the test on Kristy & see if he can
benefit Kristy in anyway. So now with that in the back of my head & with her
having so much anxiety over all her appointments I canceled it this morning.
I asked her why they wanted to do the test so she went out & talked to the
other guy who told her that they wanted to see what her visual field is &
how much vision she already lost & then they have something to compair it to
next year & that information can help someone else with this same issue. If
that dont make me feel like she is a guinea pig I dont know what would. This
cant be fixed & this test will be stressful for her & with her issues she
has now I dont think its worth it. Its not like it cant be done when she is
older. I just hope that does not do her more harm then good by not having it
done. I am worried with her delay she wont be able to go on to school. I
just hope that she finds some life skill that she enjoys & can use that as a
job when she is older. Time will tell I guess.
Lesley

On Thu, Oct 22, 2009 at 10:10 AM, <lindashalm at aol.com> wrote:

>
> Hi Lesley, Your doctor should be able to explain to you why the ERG is
> being done, when you already have the diagnosis.    I have found that when I
> explain my concerns to  the doctors (not always  their secretaries) and ask
> them to explain how this next thing will help the patient, they see our side
> and either explain why or cancel the test.   Attitudes change about medical
> issues and what you were told at 3 may have changed.  Maybe your doctor
> knows Dr. Lewis.  I know all these RP specialists seem to be in touch with
> each other.
>
>  I'm with you as to the "too many doctors part."    Sometimes I fear it's
> for their own information.
>
> As to the bright light issues, we were always encouraged to use sun
> glasses, but my son thought he lost too much usable vision with them on.  He
> preferred to have more use of his vision NOW than to worry about the future
> when he knew it was going to get worse anyway. And he needed to have control
> over SOME part of his life.  Eventually he did find some cheap regular
> glasses that he'll wear on occasion, but rarely.
>
> I second everything said in Carol's message below.  This is why my son (who
> is now 26) is now in MN at B.L.I.N.D., INC, in Minneapolis to become as
> independent as possible and take charge of his life.  It's the best thing we
> can do for our kids.  I know they have summer programs for teens and youth.
>  Are you familiar with it yet?  Negative attitudes change when people see
> the independence.  We teach by doing; it's just a fact of life.  You'll see.
>
> Best wishes,
> Linda
>
>
> -----Original Message-----
> From: Carol Castellano <carol_castellano at verizon.net>
> Sent: Thu, Oct 22, 2009 10:08 am
> Subject: Re: [blindkid] New member
>
>
> 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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