[tri-med] Re: Eye Questions

Hi Tammy
Its our sons left eye the same as your sons. The specialist we see for his 
corneal choristoma is a leading doctor in the world with regards to this 
condition, his name is Mr K Nischal and we have every faith in him. He told us 
that if we had come to see him with our son 10 years ago when he was pioneering 
the corneal transplant for this condition he would have done the operation ASAP 
but today is a different story. He said he has learnt through experience that 
it is more often better to leave the choristoma alone as the child frequently 
has problems after the op. He said that if my son had it in both eyes he would 
operate on one to give him a chance of some vision, but that in his opinion it 
is not worth the risks to operate anymore. The sad thing is, is that even if 
they come up with a wonderful way of cleaning it up in the future his brain 
would still be switched off from that eye due to the fact that the brain learns 
to see from birth and as my sons
 opacity is over his pupil not enough light could get through to allow sight to 
be encouraged. BUT, and I put a big but we were told recently by our sons other 
eye consultant that he believes that the research now being done with 
microchips and vision that there will be an op in future to switch eye onto 
brain.
Anyway, my son is 4 years old in July and was born 3 months prem and we spent 6 
months in special baby care unit as he kept having severe apneas and bouts of 
pneumonia. He was diagnosed with trisomy 8 mosaic at about 2 weeks old after a 
doctor wondered about his clenched fists. He did not show any other 'symptoms' 
at the time and all the other doctors didn't expect the result that came back. 
We were told that it was very rare and that there were only 100 recorded cases 
world wide (which I now know to be untrue and that there are more cases than 
this figure) even the geneticist didn't know anything about t8 mosaic and gave 
us some info from some old medical journals full of photos of sick looking 
children. We went home and cried. 
 It was around 4 months when doctors were giving up on him and we were told to 
pack up our bags as we were going to a bigger hospital. Thank god we did move 
hospitals as the new doctors looked upon him with fresh eyes and after I spoke 
to them about his reflux they did a barium swallow and found he had a 
malrotation of the gut. He then had an emergency op to correct this and after 
this he never had another apnea. It was believed that the apneas he had been 
having were due to the pain he was in. Within 6 weeks after the op we made it 
home. Because he was so prem he came home on oxygen and had treatment for 
reflux. His muscle tone was really poor so we had to keep him upright most of 
the day due to his reflux choking him. Time went on, he came off oxygen at 
around 9 months old and began light therapy for his vision. He still has vision 
therapy, physiotherapy, speech therapy, occupational therapy. His reflux is 
mild now and we call it his up and downs. He
 has reflux in both kidneys and was on antibiotics trimethoprim for the first 
three years to try and prevent urine infections. He also has a mild scoliosis 
and kyphus it is suspected to be positional due to his poor muscle tone. He 
also has some joint stiffness in some fingers and his right shoulder. He has 
grown into a fab little boy with a wicked humor. He has speech delays, but has 
picked up sign along really well, so much so he makes up his own signs which we 
all have fun trying to figure out. He bottom shuffles and is starting to get 
the strength to stand at the coffee table and take steps aided. He starts main 
stream school in September and attends nursery at the moment with a one to one. 
He loves it and it has really brought him on. He has a great depth of 
understanding and gets a little frustrated because he cant always get his 
message across. A couple of weeks ago he was desperately trying to tell me 
something but all that was coming out was his
 usual g noises, I asked him to point to it and he shook his head and repeated 
noises. In the end I burst into tears and said I am so sorry but I don't know 
what your saying (I was having a bad day!!) but we will work it out, with that 
my son grabbed my hand and patted it and smiled as if to say 'don't worry 
mummy'. Needless to say that made me cry more! 
We now have a little girl who is 5 months old and she is fascinated with her 
brother and he is starting to share his toys with her! Do you have any other 
children?
I look forward to chatting about our kids and lives. Nice to meet you tammy and 
Cayden.

Katy. son t8 mosaic.




----- Original Message ----
From: Shawn & Tammy Armstrong <sarmstrong7@xxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Saturday, 19 April, 2008 5:15:08 PM
Subject: [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.
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>
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