[tri-med] Re: Eye Questions

We patched our son like mad from about 1 year. I think it helped a little but 
baring in mind he has a corneal choristoma in his left eye which is looks like 
a cataract but isn't because if it was they could remove it. We patched, added 
tropicamide drops to his left eye to try and let in as much light as possible 
to try and get the brain to switch on to that eye. We see a specialist about 
twice a year he is the only one who specialises in this condition in the whole 
UK. We have our last ever appointment coming up in July this year as they have 
said his left eye is not going to get any better and that they have done all 
they can - so he has limited sight in that eye - if any. But thank god his 
right eye has improved with glasses. We found that patching came to an end 
around 3 years as he would not keep it on so his turn in his eye is still there 
and sometime more noticeable on some days than others. His consultant said that 
it was more important to let him
 get on with life for a while as the patching might start to hinder his 
learning at such a crucial stage. He see a vision impairment teacher one a week 
and she is fab and knows all his ways of trying to get out of things. She has 
explained to me about the things he will need when he goes to school, like a 
laptop, larger writing in books, a magnifier.
Katy. son t8 mosaic.



----- Original Message ----
From: Jennifer Vanderbeek <phil46@xxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Friday, 18 April, 2008 11:43:30 PM
Subject: [tri-med] Re: Eye Questions

Elanor had strabismus and amblyopia when she was little.  We patched her eye
for months, and it helped some, but didn't fix it.  I guess you have to
start patching very early for it to work (how early, I'm not sure), and we
couldn't be very consistent because Elanor figured out how to get the patch
off (stinker).  We finally had surgery when she was 2 1/2, and it worked
wonders!  Her eyesight is pretty good now (that we can tell) and she only
gets a little crossed when she is really tired, but barely.  It was pretty
minor, and she recovered quickly.  When they do the surgery, they have to
adjust both eyes so that they eyes properly align.  Elanor also had ptosis
surgery (droopy eyelid), and that wasn't quite as successful.  Her left eye
still droops a little, and it doesn't always close when she sleeps.  Anyway,
that is what we did.  I guess in addition to patching and surgery, there are
corrective lenses and eyedrops.  I can't say what you should tell Dr. #2,
but it's good that you are getting a second opinion.  Our kids have so much
to overcome as it is, eyesight shouldn't be one of them if it can be
improved!


Jennifer Vanderbeek
Meridian, ID
Mom to Arwen, 10; Elanor (T18), 8; caregiver to Joe (CP), 29, and wife to
Andrew

Visity Elanor's Caringbridge site at:

http://www.caringbridge.org/visit/elanoranne 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Wendi
Sent: Friday, April 18, 2008 12:56 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Eye Questions

Hi everyone!
  
  Jackson has strabismus in his left eye.  We've been seeing an eye dr. at
Children's Hospital since he was a baby and every year he tells us to come
back in a year and does nothing.  I think the wandering is getting worse and
I'm also concerned about his depth perception.  He trips over toys all the
time and has trouble going from tile to carpet or tile to different
patterned tile.  The dr. did say that he felt J was "far-sighted", but
didn't recommended glasses or anything but "come back in a year".  
  
  I've decided to get a second opinion from a non-Children's dr, scheduled
for May 6th.  What questions should I ask?  What can I do to make sure he
gets what he needs?  Do I tell the new dr. that this is a second opinion
appt or see what she says about his eyes first?
  
  Any input would be appreciated.  Thanks!
  
  Wendi, mom to Jackson, trisomy 4p, inverted duplication, 3 1/2 years, and
Jameson 3 months.

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

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


      __________________________________________________________
Sent from Yahoo! Mail.
A Smarter Email http://uk.docs.yahoo.com/nowyoucan.html
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: