Light Sensitivity

[Guest guest]

Jo- Have you tried hats? He could play with them in the house to get used to

them before you go out. He may find that he actually likes them because they

can cut down on the glare and brightness. Window tinting is pretty

easy-check with your local police dept. to see what the regulations are for

dark auto tinting. There are also companys that will do your windows at home

so you don't have to keep the curtains closed all day. As he gets older

he'll probably " see " the wisdom of sunglasses. Hang in there.

Barbara-mom,(CHARGE)9,Rosie13

[Guest guest]

This light sensitivity problem is a bad one for us. I can remember crying

because of the light hurting and it was so painful when I was small. I would beg

my parents to let me wear sunglasses but they refused, saying that they did not

want to block the little bit of sight that I had. They had no idea that the

light hampered me more than it helped.

Kay

light sensitivity

Hi All,

I'm looking for and tips and tricks that I can use for light sensitivity...

Josh is not at all keen on bright light, so going outside (unless at night!) is

a bit of an ordeal. This is to say the least rather cramping our style! We seem

to keep our curtains pulled shut all day :0(

I have tried little " baby bands " , sun glasses for babies, but he hates them -

he is very aware of stuff around his face with all the taping and nose splints

we have to put in all the time since his cleft lip repair, plus also eye drops

since the eye operation too - sigh. Hoping that he will be able to be not so

worried when we can finish with the nose splints - counting down!

Going in the car we drape a dark blanket over the whole car seat, he still

fits in his baby 'bucket' type seat, but - eventually ;0) - will grow out of

this arrangement.

Would tinted windows be dark enough?

He seems to be able to tolerate slightly brighter light for a wee while, and

then obviously his eyes get sore, or something, and he is happier to go back to

a darker environment. Anyway, ideas would be appreciated

TIA

Jo - from the dark end of our living room!

ds Josh 20-8-02, CHaRGE'r + uclbcp, ds Ben, dh Chris

[Guest guest]

Pardon my ignorance, but what is the light sensitivity caused from?

My daughter was extremely light sensitive until she went on imipramine for

migraines and cyclical vomiting. does not have any eye problems.

Lori Myers

Mom to (5 1/2), (2 1/2 CHARGE Association, CHD, ECMO 12 days,

Bi-lateral Choanal Atresia, G-button, partial hearing loss), and Emma (5 months)

Dallas, Texas

Joanne Maslin wrote:

> Hi All,

> I'm looking for and tips and tricks that I can use for light sensitivity...

Josh is not at all keen on bright light, so going outside (unless at night!) is

a bit of an ordeal. This is to say the least rather cramping our style! We seem

to keep our curtains pulled shut all day :0(

> I have tried little " baby bands " , sun glasses for babies, but he hates them -

he is very aware of stuff around his face with all the taping and nose splints

we have to put in all the time since his cleft lip repair, plus also eye drops

since the eye operation too - sigh. Hoping that he will be able to be not so

worried when we can finish with the nose splints - counting down!

> Going in the car we drape a dark blanket over the whole car seat, he still

fits in his baby 'bucket' type seat, but - eventually ;0) - will grow out of

this arrangement.

> Would tinted windows be dark enough?

> He seems to be able to tolerate slightly brighter light for a wee while, and

then obviously his eyes get sore, or something, and he is happier to go back to

a darker environment. Anyway, ideas would be appreciated

> TIA

> Jo - from the dark end of our living room!

> ds Josh 20-8-02, CHaRGE'r + uclbcp, ds Ben, dh Chris

>

>

[Guest guest]

Hi Celest,

I have had Smokey since April of 2002, not quite a year. However, prior to him I

had a dog for a month that did not work out and prior to that I had April for 6

1/2 years. It is my pleasure to be a part of this great group. I've learned a

lot about why I do some of the things that I do.

Kay

Light Sensitivity

Hi,

I remember when nne was a baby she would cry everytime we went in the

car. At that time was quite often with all the doctor's visits and therapy she

had. By the time we got anywhere she would be dripping from perspiration. I

remember being so frustrated as I was driving but didn't have an alternative

other than not bringing her where she needed to be.

Also, anytime I would attempt to put her in her stroller she would also cry.

She didn't like the wind or sun. I remember a good friend telling my husband

and me to stop driving everytime nne would cry. He never realized that we

never would have left our driveway. I had no idea that she was in pain.

Thanks for sharing Kaye. It is so nice to have someone like you on the

list who has CHARGE. You are remarkable. How long have you had your seeing eye

dog?

Celeste

[Guest guest]

With the coloboma the light sensitivity has to do with the iris, which blocks

out light, having a hole in it or being key shaped like mine.

Kay

Re: light sensitivity

Pardon my ignorance, but what is the light sensitivity caused from?

My daughter was extremely light sensitive until she went on imipramine for

migraines and cyclical vomiting. does not have any eye problems.

Lori Myers

Mom to (5 1/2), (2 1/2 CHARGE Association, CHD, ECMO 12 days,

Bi-lateral Choanal Atresia, G-button, partial hearing loss), and Emma (5 months)

Dallas, Texas

Joanne Maslin wrote:

> Hi All,

> I'm looking for and tips and tricks that I can use for light sensitivity...

Josh is not at all keen on bright light, so going outside (unless at night!) is

a bit of an ordeal. This is to say the least rather cramping our style! We seem

to keep our curtains pulled shut all day :0(

> I have tried little " baby bands " , sun glasses for babies, but he hates them

- he is very aware of stuff around his face with all the taping and nose splints

we have to put in all the time since his cleft lip repair, plus also eye drops

since the eye operation too - sigh. Hoping that he will be able to be not so

worried when we can finish with the nose splints - counting down!

> Going in the car we drape a dark blanket over the whole car seat, he still

fits in his baby 'bucket' type seat, but - eventually ;0) - will grow out of

this arrangement.

> Would tinted windows be dark enough?

> He seems to be able to tolerate slightly brighter light for a wee while, and

then obviously his eyes get sore, or something, and he is happier to go back to

a darker environment. Anyway, ideas would be appreciated

> TIA

> Jo - from the dark end of our living room!

> ds Josh 20-8-02, CHaRGE'r + uclbcp, ds Ben, dh Chris

>

>

[Guest guest]

Lori and ,

One of the factors described by Dr. Roman, who is studying

ways to improve use of vision in people with cortical vision impairment

(CVI) or neurological vision impairment(NVI), is fascination with light.

She writes that the fascination with light can be a symptom associated

with CVI or NVI. She believes that neurological changes can be

encouraged that will improve the CVI. She is writing and studying ways

to encourage that neurological change.

Mom to Kendra, and Camille

Re: Light Sensitivity

Lori, my son does the same thing. He loves flashlights and

lamps.

[Guest guest]

hi,

Yes, Josh is similarily entranced! He seems to hate sunlight, or even just

being outside under an umbrella in the shade would be too much light... but

does seem to enjoy staring up at our indoor lights, although maybe not the

very bright ones directly though, he turns away sometimes if we walk him

under one accidently.

He loves 'hospital' lights, all those floressant bulbs :0)

I am somewhat encouraged to hear that your dd is better with sunlight now,

at least I can hope it might get easier,

Jo, ds Josh 20-8-02 CHaRGE'r +, ds Ben 5-4-99, dh Chris

----- Original Message -----

> she just loves lights! Her first word (in sign

> lang.) was " light " - she learned that word before " mama " or " da> Does

anyone else have a child like this?

[Guest guest]

Jillyan has colobomas in both and glaucoma in the left. Both cause light

sensitivity -- and when combined as in our case -- she does not like bright

sunlight at all. She will be 2 in May and now is fine in the car with

shades on both windows -- but going out into the yard to play is not her

idea of fun when it is sunny. She will eventually have to get glasses when

mobile so we have to get her used to having something on her face. This

summer our experiment is going to be tinted swim goggles -- she can't pull

them off to investigate as she does with hats/sun glasses.

Huggins

Wife to Robin, Mom to Hailey (6) and Jillyan (1)

Re: light sensitivity

hi,

I think in Josh's case it could either be the glaucoma which is in one eye

or the coloboma which is in the other eye... maybe both? Or maybe

something

else? No one we've asked has come up with any reasons.

Jo

----- Original Message -----

> Pardon my ignorance, but what is the light sensitivity caused from?

>

[Guest guest]

----- Original Message -----

> has had 'periods' when the brightness (w/ exposure) hasn't bothered

> her, but it still is an enormous obstacle for us.

I don't post often, but I thought someone may be interested in trying what

we did with regard to the light sensitivity.

For those that don't know us, I am , mum to who was at one stage

diagnosed with CHARGE syndrome, but we later found out (just before we

attended the 1997 Charge conference in Boston) that he actually has a

chromosomal anomaly called Trisomy 18 mosaic.

Anyway - has always been light sensitive, to the point of crying in

pain if we went in the car on bright days. One of the problems is that he

has a reduced tear film. The only indicator we had prior to testing for this

was that he rarely produced " overflow " tears. That is he would cry but few

if any tears would fall down his cheeks. Using artificial tears has helped

with that side of things.

But there was also a commonality between other children who had Trisomy 18

and light sensitivity. Such a common problem that one of the dads who is

also an opthamologist hands out teeny tiny sunglasses, for the babies, at

the conference each year. (kids with T-18 are usually really, really tiny)

He was doing some research on a degenerative eye disease in older people and

noticed some similarities. One being that the vitreous humor (the fluid in

the eye) was not as clear as other people. This causes no problem with

vision per sa, but it does cause huge problems with glare. Because its

cloudy it causes more glare within the eye (light refraction).

This research he was doing showed that a naturally occuring element called

lutein actually reduced this cloudiness, which in turn reduced the light

sensitivity. Lutein is easy enough to get - its found in green leafy

vegetables, or you can buy tablets at the health food store.

A few of us mums started a trial of our own - all we do is puree a few

spinach leaves (cooked as cooking actually helps release the lutein which is

in the cell wall) and give that via the g-tube (or mouth) each evening. All

of us reported a huge improvement in the light sensitivity while we were

doing this. Another great side effect is that it also helped with the

chronic constipation. The down side is that it only works while you are

using it. It takes about 6 weeks to get the benefits, but it reverts back to

the way it was before in about 6 weeks after you stop.

So its not a cure - but its a neat and easy treatment.

When Jan mentioned that had periods when the light sensitivity was

better than others, I was wondering if it may equate to when greens were in

season. The vegetable highest in lutein is collard greens, something we

can't get in Australia, so I use silverbeet, english spinach and/or

broccoli.

It may be an easy solution?? and at least worth a try..........

" We must not allow other people's limited perceptions to define us. "

- Virginia Satir -

Keep Looking for Rainbows!!!

_--_|\

/\

\_.--._ /

v Mum to (8, T-18 mosaic)

Sydney, Australia

http://members.optushome.com.au/karens

http://www.trisomyonline.org

[Guest guest]

THanks for the tip, . We make all of Kennedy's food via a huge blender, so

it won't hurt to throw some spinach in!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 11, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: light sensitivity

----- Original Message -----

> has had 'periods' when the brightness (w/ exposure) hasn't bothered

> her, but it still is an enormous obstacle for us.

I don't post often, but I thought someone may be interested in trying what

we did with regard to the light sensitivity.

For those that don't know us, I am , mum to who was at one stage

diagnosed with CHARGE syndrome, but we later found out (just before we

attended the 1997 Charge conference in Boston) that he actually has a

chromosomal anomaly called Trisomy 18 mosaic.

Anyway - has always been light sensitive, to the point of crying in

pain if we went in the car on bright days. One of the problems is that he

has a reduced tear film. The only indicator we had prior to testing for this

was that he rarely produced " overflow " tears. That is he would cry but few

if any tears would fall down his cheeks. Using artificial tears has helped

with that side of things.

But there was also a commonality between other children who had Trisomy 18

and light sensitivity. Such a common problem that one of the dads who is

also an opthamologist hands out teeny tiny sunglasses, for the babies, at

the conference each year. (kids with T-18 are usually really, really tiny)

He was doing some research on a degenerative eye disease in older people and

noticed some similarities. One being that the vitreous humor (the fluid in

the eye) was not as clear as other people. This causes no problem with

vision per sa, but it does cause huge problems with glare. Because its

cloudy it causes more glare within the eye (light refraction).

This research he was doing showed that a naturally occuring element called

lutein actually reduced this cloudiness, which in turn reduced the light

sensitivity. Lutein is easy enough to get - its found in green leafy

vegetables, or you can buy tablets at the health food store.

A few of us mums started a trial of our own - all we do is puree a few

spinach leaves (cooked as cooking actually helps release the lutein which is

in the cell wall) and give that via the g-tube (or mouth) each evening. All

of us reported a huge improvement in the light sensitivity while we were

doing this. Another great side effect is that it also helped with the

chronic constipation. The down side is that it only works while you are

using it. It takes about 6 weeks to get the benefits, but it reverts back to

the way it was before in about 6 weeks after you stop.

So its not a cure - but its a neat and easy treatment.

When Jan mentioned that had periods when the light sensitivity was

better than others, I was wondering if it may equate to when greens were in

season. The vegetable highest in lutein is collard greens, something we

can't get in Australia, so I use silverbeet, english spinach and/or

broccoli.

It may be an easy solution?? and at least worth a try..........

" We must not allow other people's limited perceptions to define us. "

- Virginia Satir -

Keep Looking for Rainbows!!!

_--_|\

/\

\_.--._ /

v Mum to (8, T-18 mosaic)

Sydney, Australia

http://members.optushome.com.au/karens

http://www.trisomyonline.org

[Guest guest]

Wow! I never knew there were so many other kids who love light as

much as Cheyenne! She would have a some sort of light (flashlight,

light toy, etc.) right at her eyeball all the time if we'd let her,

which of course we don't!! She does okay in the sun if we have some

sort of shade, like the canopy on her stroller, & she'll put her hand

over her eyes if it's really bright, but she won't wear sunglasses or

hats! When she was a baby the sun was awful for her, but it has

gotten much better over the years!

Lori:Mom2CHARgEr,Cheye,7yrs.