[tri-med] Re: Eye Questions

Katy,
Our son also has a Corneal Opacity (that is what they call it here in the 
states).  They have offered us to have a "corneal transplant", but we 
declined.  Having a corneal transplant only works 50% of the time.  The 
doctor told us, if it worked Cayden would be able to see just fine, 
but...........if it didn't work he would be completely blind in that eye. 
Like you, we know our son can see out of that eye, so we didn't want to 
jeopardize that by having a transplant with such poor odds in our favor. 
Once Cayden gets older and understands his options we will then let him make 
the decision on if he wants to have the transplant or not.  We do feel like 
he can see fairly well out of that eye.  He performs well in school and is 
able to walk, run and climb.  He doesn't seem to fall or anything due to his 
limited eye sight in that eye.  I think at one time it did hinder his 
ability to take a step off of a curb, but his sight has either gotten 
stronger or he has figured out how to maneuver around without struggling.
Katy - Which one of your son's eye's is affected by his Corenal  Choristoma? 
Our son's left eye is affected.  Would you mind telling me your son's story? 
I'm knew here and still trying to put a story with everyone I communicate 
with.
Thank You!
Tammy Armstrong
----- Original Message ----- 
From: "Katy Roberts" <basil1_2000@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Saturday, April 19, 2008 4:40 AM
Subject: [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.
>
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>                  Families Helping Families On-line
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>                  Families Helping Families On-line
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>
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