[tri-med] Re: opthamologist

Wow.  My bristles went up just hearing your story second hand!  I personally
decided long ago that if a doctor told us that he/she wouldn't do a
procedure on Elanor because of her trisomy, even though it would be fine for
a "normal" kid, that would be the last time we saw that doctor.  Many
doctors don't think our kids have a life worth living, and to put them
through surgeries and the like would be cruel because they don't know what
is happening.  While it is a very difficult thing to inflict pain (even
necessary) on a little kid/baby who doesn't understand, I feel that if it is
something that will drastically improve their quality of life, it is
something I would consider.  I know some people think we have been wrong in
putting Elanor through two heart surgeries, cleft lip repair, eye surgery,
and now scoliosis surgery.  I feel it has given her a chance to live,
thrive, see, and continue to live a rich and happy life.  We had Elanor's
strabismus and ptosis surgeries when she was three.  She was mad as a wed
hen and wouldn't acknowledge my presence in any way for days (after all, I
took her in, and it was all my fault!).  But her eyesight was much better,
and she didn't have a droopy eyelid getting in her way.  I guess I have the
complete opposite opinion of your doctors:  if it is appropriate for an
average kid, it would be cruel, unfair, and even discriminatory not to
consider it for our kids!  It's sad, but so many doctors get statistics,
case studies, and their records get in the way of seeing each of our kids as
individuals.  I know surgeries are risky for trisomy kids, but that doesn't
mean they should be excluded from improving their lives.  Ok.  I will step
off the soapbox now...  :)

Jennifer, mom to Arwen, 9; Elanor, 7 (T18); caregiver to Joe, 29 (CP); and
wife to Andrew

P.S.--Elanor's eye surgeries went great!  Her ophthalmologist is fantastic.
She didn't hesitate to consider surgeries for Elanor, she felt as I do, if a
normal kid needs it, so does Elanor.

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of dncingqwn@xxxxxxx
Sent: Tuesday, December 18, 2007 10:35 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] opthamologist

about a week or so ago i took kaiya to see the opthamologist. wait...some
background might help this post make more sense.
kaiya has ptosis in the right eye, the nerve in the right eye is also small.
in her left eye the nerve is shaped differently - has a coloboma. even with
this, the doctors don't feel that her vision is all that bad. she tracks
well, she looks at things. so we had a visit right before conference this
year and the doc prescribed patching because he felt she was using one eye
more than the other. and i would have thought that she would use the left
eye more because the right eye is kind of closed - but he said the left eye
seemed to be the weaker one. he also prescribed glasses. he said that the
prescription wasn't all that high so they weren't mandatory - but it might
help with some of her issues at school. the one issue that i've always had
is kaiya will tilt her head back to be able to see out of her right eye.
doesn't do much for her posture! i brought this up to the doc and he said
that as long as she's compensating for the ptosis, he wouldn't recommend
surgery to fix it. so
  we went on our way...and went to see the opthamologist at conference. this
doc pretty much disagreed with everything our opthamologist here
said....which brings us to the visit a week ago (takes a long time to get in
b/c they only take medicaid patients one day a month...blah blah
blah....that's another story) so anyway - this doc that we had seen
previously, and i really liked him the first time we met b/c he sat and
talked about trisomy and had questions and made recommendations...well, he
seemed a little disturbed that i brought in a letter from the doc we saw at
conference. it's not like i walked in waving it around saying "AHA YOU WERE
WRONG!" i just said, hey - this guy said one thing and you said another -
i'm confused - can you take another look and see what you think? so yes,
kaiya is a tough examination because she would rather smile and flirt at the
doc than look through his silly lenses - deal with it dude! in the end the
doc brought in another doc in the practi
 ce and this guy took a quick look at kaiya. he sat down and we had "the
discussion". (i'm sure you are all familiar with it.) he asked if she was
going to be getting any other surgeries any time soon and i told him no.
then he went on to say that a lot of kids have ptosis as severe as hers and
don't even notice it. they just compensate with the other eye. he said that
if he saw a "regular" kid with a ptosis this severe he would definitely do
the surgery. and if she was going under for something else, he would
definitely do it b/c he could just pop in, fix the eye, and it wouldn't be a
big deal. but because of her trisomy other issues have to be considered.
(this is where the hair on the back of my neck began to bristle...) he did
not feel that she would have any issues with anesthesia, and the surgery
wouldn't be a huge issue for her because it is a simple repair. he said that
all issues had to be looked at to see if the surgery would really be
beneficial to her. we wouldn't
  ever be able to know if her vision was improved all that much because she
couldn't tell us. so he told me that while it would be a necessary procedure
for a "normal" kid - for kaiya it was basically an elective procedure. he
said that some parents choose to be agressive and some feel that their kids
have enough going on without having to be put under for this type of surgery
as well. now, to give him credit - he did put it very well. my
interpretation of our conversation is obviously not worded as well as he
said it. which is why i think i'm conflicted. i went in with the mind set
that this ptosis should definitely be fixed, and her compensations are not
working because they are negatively impacting her posture which as a whole
does not work. when i walked out, i almost felt guilty for thinking that
way... i don't know if it's just a mommy thing and i'm scared to let them do
anything to my baby...or what is going on. we go back in three months for
another check up and to gi
 ve him an answer i guess...

so basically, what do you guys think? 

kelly - mom to akaiya T18 - 5 yrs.

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                       www.trisomyonline.org
                  Families Helping Families On-line

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