[tri-med] Re: [tri-family] Eye Doctor

Hi Patricia :o)
I'm copying this to the med list because I wanted to tell you all about a
new treatment we're doing now with Devon for his eyes...after I've put my 2
cents in here about your doc situation.
We had a similar situation with our first pediatric
opthalmologist...unfortunately he was the only local one around and we had
many other specialists to see all the time who were far away and so we
stayed with him for a while. We also butted heads in a big way in the
beginning because of his assumptions. He knew nothing about t13...looked it
up in a book and then labeled Devon with many anomolies that he didn't even
have on the sole basis of the list of anomolies he read about in the book.
He also dared to write in his report that "mother may not be aware of severe
morbidity present the first year of life". He wrote that because I refused
to be negative after being told all the things wrong with Devon's eyes...he
assumed I was in denial. I wrote him one of my famed letters enlightening
him about how things were. I got his attention alright :o) And from there on
out he tiptoed around direct questions because he was so afraid of being
pinned down and held to something he said...I got tired of it :o( He didn't
give Devon glasses either saying the same thing as yours, until he was about
3 years old I believe. He didn't believe Devon would keep them on
either....but guess what??? As long as there's something interesting to
watch he keeps them on just fine....and he's better about it at school than
at home :o) The problem with our first guy was that he was a local...little
or no hands on experience with handicapped children and NONE with trisomy
anything. Our vision tutor gave us the name of his current specialist and we
switched to him a couple years ago....I think Devon was 3 1/2yrs??? Dr.
Blumenfeld has many many handicapped patients and lots of babies (preemies).
Devon has very involved eye issues and manages to keep even this doc on his
toes and somewhere down the road when Devon needs cataract surgery he
doesn't want to be the one to do it. We're trying an alternative right now
though that we're getting some good results from. We're using Mydfrin drops
to enlarge Devon's pupil in his sighted eye (left). The idea is for the
drops to NON surgically enlarge Devon's pupil so that he can see around the
cataract. I put a drop in at 5:30 AM before school (bus picks him up at
6:30) and the school puts a drop in at 10:30 AM. So far we're noticing alot
of improvement in his navagating around furniture and stuff in new
surroundings and his teacher has seen improvement with his navigating crowds
at school :o) We're hoping these drops work for a very long time needless to
say :o) I was concerned about using the drops at first because I had visions
of blurred vision the way it is when I've had my pupils dialated for
exams...but the neat thing about these drops is that they only enlarge the
pupil and don't mess with his focus at all ;o)
The old doc never even suggested anything like this and we really didn't
want invasive eye surgery because I know of too many Trisomy children who've
had failed cataract surgery where they ended up with worse vision after than
before because of scar tissue or fumbled procedures because the kids eye
issues were so involved surgery didn't go as planned :O(
Good Luck Patricia!!! Sometimes ya gotta wade through a dud or two before
you find a treasure :o)
Love,
Penny...devoted wife to Joe and "Mom" to Nick (11 yrs...lover of Harry
Potter, Pokemon, Legos, Popcorn Chicken, Pizza, cheese sticks and chocolate
icecream w/ovaltine sprinkles) and "Mommy" to Devon (AKA-Stinky Boy..or
Devonrude...Lover of Bear, Elmo and the Muppets, Stuart Little, Barney,
Blue, Rolie Polie Olie, Pooh and Co. and food in general, 6 1/2 years old
(6-15-95) !!! Full Trisomy 13 w/balanced translocation 5 and 13)...Brat and
KC (the feline children) and Snitch (Nick's new turtle :o)
:o) DeLand, Florida
Meet our family at http://www.trisomyonline.org/victor.htm  (Compliments of
my dear friend Karen!)
And last but not least, check out the homepage I made!
http://www.geocities.com/penvic4/Penny_sPage.html
The stone that was rejected by the builders, has become the cornerstone
(Psalm 118)

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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