[tri-med] Re: opthamologist

that's an excellent idea about the patching...we used the patches from the drug 
store (pirate looking things) and kaiya first went crosseyed trying to look at 
what was on her eye, and then she just closed both eyes. maybe something like 
the contact paper would still let light in so she would just think the eye was 
acting funny or something.



we were told that the surgery would just involve going in and basically tacking 
the muscle up higher. no mention was made of harvesting muscle from another 
location...something i will definitely have to look into further.

i have basically decided that we will do the surgery. before i went into the 
appointment i was sure that surgery was the only option. i think the doctor 
threw me off and made me feel guilty about wanting to get her eye fixed. but i 
know that letting her continue on as she is is not helping her at all. i've 
heard about the difficulties in closing the eye afterward - but kaiya is pretty 
agreeable to letting me do weird stuff to her, so putting on creams shouldn't 
be a problem. and that's a small price to pay if she's going to have improved 
vision.

she has developed this new behavior that makes bath time oh so fun - she likes 
to put her eye (oddly, only the eye with the ptosis) into the water. she will 
sit there with it open and submerged for a couple of seconds, and then pull her 
head back, rub the eye, and look at me like "why'd you do that?!?". i'm 
thinking of bathing her with goggles on b/c i'm afraid she's going to go blind 
from getting soap in her eye! i'm telling you, the kid is a laugh a minute...

kelly - mom to akaiya T18 - 5yrs

p.s. i'm shocked that philina lets you lead her anywhere! she decided we had 
somewhere to be at?the picnic at conference and there was no way she was going 
to let me direct her to anywhere she didn't want to go!


-----Original Message-----
From: Fawna Lockwood <fawna33@xxxxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Thu, 20 Dec 2007 8:11 pm
Subject: [tri-med] Re: opthamologist




Kelly,

>kaiya has ptosis in the right eye...the doc prescribed patching because he
>felt she was using one eye more than the other...he also prescribed
glasses.

The glasses will make the patching easier.  You can just patch the lens with
some oblique self adhesive contact paper. It's the stuff you buy to convert
clear window glass into frosted.

>he said that as long as she's compensating for the ptosis, he wouldn't
>recommend surgery to fix it...he asked if she was going to be getting any
>other surgeries any time soon and i told him no...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...)

Okay, as the mom who drug her feet on getting Miss P's double ptosis
repaired,
let me play devil's advocate here. I didn't have Philina's done until she
was
18, but I've heard from a mom of a younger child on another list that when
it's
done young it will probably require another surgery later to fine tune it.
They
harvested a tendon from Philina's leg to do her repair (scar & some concern
if
you want them to learn to walk and they haven't yet), but the other option
is to
get one from the parts bank.  Back in '83 and the years shortly after, AIDS
& Hep
C where rampant in donated blood & parts and I figured she already had
enough
problems without risking that too.  And once the repair is done the child
may not
be able to ever shut their eyes again, including sleeping with them open,
which
means you will have to put ointment and/or drops in them several times a day
so
they don't dry out. Because if they do they will end up losing eye sight to
scratches.   Philina hated the ointment and use to hide it from me between
treatments.  Her's was also done in tandem with a couple of other
procedures, as
most of her doctors don't like to subject her to day surgery just for their
benefit.
Mind you they are all gung ho with a wish list of things they would like to
do to
her, they just don't want to be the cause of any negative repercussions.

Oh and somewhere along the line of this conversation someone objected to
people
pushing a child ahead from behind.  This is my preferred way for Miss P.
She's a
moose, and when she hangs on my arm and shoulder I tend to end up with my
shoulder,
neck, and upper back out of whack. And because she's on daily aspirin
therapy for
her Moya Moya she bruises easily.  So flat hands pushing on her upper
back/shoulders
to steer her leaves fewer marks then a firm grip on her arm does.

Fawna, Research coordinator TRIS Project, mom
to Thom & Rhonda, Lara, & Philina 24yrs (PT6p
& Moya Moya Syndrome), Escondido, CA USA
http://home.mindspring.com/~fawna33/


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


________________________________________________________________________
More new features than ever.  Check out the new AOL Mail ! - 
http://webmail.aol.com


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

Other related posts: