[tri-med] Re: Lutein & light sensitivity

----- Original Message ----- 
From: "Jennifer Vanderbeek"
> I'm sorry if I'm running on a bit, but I am really excited about the
> possibility of taking Elanor outside without sunshades, hats, sunglasses
> blankets, and sneezing/gagging/spitting up!

Sorry Jennifer - you will still need the hats and sunglasses. The lutein
reduces the amount of pain Alex experiences in the sun, and it has reduced
the light sensitivity but its not a cure. He still automatically reaches for
his sunglasses if I say we are going in the car or outside (in fact he now
wears transitional lenses all the time even though he doesn't need them to
correct a vision problem). If he forgets his dark sunnies he will make me go
home.

The lutein DOES work though - he is certainly a lot better than he used to
be and if I do stop the lutein it goes back to what it was within a couple
of months.

Besides - everyone should wear sunglasses and hats regardless as Nan said.
But its even more important for those with blue eyes (Alex).

Another thought to check is Elanor's tear production. A few of our kids
don't produce a lot of overflow tears which is indicative of an autonmic
issue. The reduced tear production makes them more light sensitive, causes
pain at times and certainly makes the eyes "gritty" (which makes Alex
irritable).

Alex has been formally tested for this and I am trying to think of the name
(shear - something). There were two parts. The first part involved putting a
green dye in his eye and then the opthamologist looked at the film of fluid
covering the eye. In Alex's case that fluid film was one third what it
should have been. The second part involved putting a piece of blotting paper
on his lower eye and measuring the time it took to get wet. (he was NOT
impressed at that part)

I had already noticed that Alex rarely cried tears - where other kids would
cry buckets he would only produce a few.

Its not a major issue - we use artificial tears, particularly at night when
his eyes are more prone to drying out because he doesn't always close his
eyes completely (unnerving when he is in REM sleep!!) and also during the
day when its windy, dry or if he is in airconditioning or a room with
heating. We also let him wear the transitional lenses. It provides a barrier
and helps to stop his eyes drying out as well as offering his eyes constant
protection from sunlight.

We can not change the wind. But we can change the sails.
~Ghandi~


Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)
http://members.optushome.com.au/karens

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

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