Severe light sensitivity - ocular/eye sensitivity to the light -

August 27, 2006

Hello fellow parents,

My youngest daughter, now 4 years old, who has CHARGE, has always had

terrible light sensitivity. Whenever we go outside, Nettie wears

sunglasses, a wide-brim hat, and since she is not mobile, her

therpeuatic stroller has an extensive canopy. We have gone to several

pediatric opthalmologists etc., We've gone to Wills Eye in

Philadelphia, NYU, HUMC, - we have no answers - all we can do is the

sunglasses, etc. which is still not always enough when the sun is

shining. For example, even with sun shades etc. Nettie does not enjoy

the pool because the sun is shining as the shades are not adequate.

Does anyone else have this same challenge? Any advice - please share.

Thank you,

Cindy

Mother to , Noah (identical twin boys - age 8), Elaine (age 6),

Nettie (age 4).

Nettie - wears a cochlear implant, not yet mobile (but working hard in

PT), not yet speaking (but making sounds and enjoying ST), still

reliant on g-tube (but improving slowly in oral feeding), and very

busy with OT, ST, FT, VT, PT etc.

August 27, 2006

I have the problem but its a bit milder. I have swim goggles that are

shaded. Why not try something like that? Also, do you have a national

institute for the blind near you? See if someone could maby figure out what

type of tint is best. Different colours have slightly different effects.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

August 27, 2006

How dark are the sunglasses? Are the photo grey? There are different

levels of dark they can be, just check to be sure she has the darkest and

there are also glasses that have the top & side pieces to block rays coming

in those ways as well.

Good luck! Kennedy was very light sensitive when very young (birth-2) but

she has gotten over it although you will still see her cover her right eye

when outside on a bright day. She will wear her sunglasses only sometimes

because she loves her other glasses. At 8, she can make her own choice

whether to run around covering her eye like a pirate or wear her sunglasses

& hat!

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

>

> Hello fellow parents,

> My youngest daughter, now 4 years old, who has CHARGE, has always had

> terrible light sensitivity. Whenever we go outside, Nettie wears

> sunglasses, a wide-brim hat, and since she is not mobile, her

> therpeuatic stroller has an extensive canopy. We have gone to several

> pediatric opthalmologists etc., We've gone to Wills Eye in

> Philadelphia, NYU, HUMC, - we have no answers - all we can do is the

> sunglasses, etc. which is still not always enough when the sun is

> shining. For example, even with sun shades etc. Nettie does not enjoy

> the pool because the sun is shining as the shades are not adequate.

> Does anyone else have this same challenge? Any advice - please share.

> Thank you,

> Cindy

> Mother to , Noah (identical twin boys - age 8), Elaine (age 6),

> Nettie (age 4).

> Nettie - wears a cochlear implant, not yet mobile (but working hard in

> PT), not yet speaking (but making sounds and enjoying ST), still

> reliant on g-tube (but improving slowly in oral feeding), and very

> busy with OT, ST, FT, VT, PT etc.

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

August 27, 2006

I have had severe sensitivity to light all my life. The normal sunglasses that

everyone wears don't usually work for me, I can wear them in the house and not

even realize that I'm wearing sunglasses until I look at the light or look

outside and realize that the brightness is a shade darker than normal. But I

still wear them, cause right now I can stand the sun to a certain degree. I've

gotten used to being without sunglasses for years, that to me it's normal to

adjust between being outside in the hottest brightest weather and being inside

with minimal lighting.

My night vision is better than my day vision, I can get around with a candle

perfectly fine, where everyone else around me is turning on lights where ever

they go. I would have to say, I work on seeing more then I do on hearing more in

my day to day life. I've adjusted to practically any kind of condition - the

sunniest brightest day, or the dimmest darkest night.

The best way to describe our sensitivity to sun is to give you this perfect

example. Have you ever been to the eye doctor to get your eye checked, and the

doctor gives you these yellow drops that make your eyes fuzzy, and you're eyes

really big, and it takes the eyes a few hours to return to normal. You step out

into the sun, and your instict is to go " oh god " , cause it hurts so bad. That's

exactly what it's like for us.

Hope it helps. Sincerely yours; Krista Bach. 27 year old CHARGEr.

cbbalsam wrote: