Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Glad it is getting better for him and you have a car seat solution. Kim Re: Sunlight/glare solution hi Kim, i should have given an update on Josh too ... he isn't as sensitive to the bright light as he used to be - thank goodness :0) ... he does tolerate normal house levels now without pulling the curtains during the day (unless the sun is low and coming straight into his eyes - but hey, the rest of us don't like that either!). he even goes outside on a sunny day with a hat and sometimes needs the goggles and sometimes just doesn't seem to worry with either! i don't know what has made the improvement ... it has just happened very gradually as he has gotten older ... i think his ability to move and position his own body out of light that is uncomfortable is definitely a bonus - and that is probably the one reason why traveling in the car has been so awful for him as he is strapped into a car seat and unable to turn his back on the moving brightest light... hence the sun goggles are great as he can have them on or off as needed. i did check out that link thanks, it looked great ... he'd be the trendiest baby on the block ;0) i'll have to see if we can get this sort of thing locally - as they don't actually need to be prescription (yet) i maybe able to get little sun glasses that are tinted the right shade. Jo ds Ben, ds Josh ----- Original Message ----- > > Whenever you talk about Josh's extreme photosensitivity, Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Glad it is getting better for him and you have a car seat solution. Kim Re: Sunlight/glare solution hi Kim, i should have given an update on Josh too ... he isn't as sensitive to the bright light as he used to be - thank goodness :0) ... he does tolerate normal house levels now without pulling the curtains during the day (unless the sun is low and coming straight into his eyes - but hey, the rest of us don't like that either!). he even goes outside on a sunny day with a hat and sometimes needs the goggles and sometimes just doesn't seem to worry with either! i don't know what has made the improvement ... it has just happened very gradually as he has gotten older ... i think his ability to move and position his own body out of light that is uncomfortable is definitely a bonus - and that is probably the one reason why traveling in the car has been so awful for him as he is strapped into a car seat and unable to turn his back on the moving brightest light... hence the sun goggles are great as he can have them on or off as needed. i did check out that link thanks, it looked great ... he'd be the trendiest baby on the block ;0) i'll have to see if we can get this sort of thing locally - as they don't actually need to be prescription (yet) i maybe able to get little sun glasses that are tinted the right shade. Jo ds Ben, ds Josh ----- Original Message ----- > > Whenever you talk about Josh's extreme photosensitivity, Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 I've been away for a few days and haven't gone through all posts yet, so I could just repeat what somebody else has written. has always been extremely photo-sensitive. She's now 20, and it took her years to wear sunglasses; she does so readily now. Earlier, we used wide brimmed hats, etc. Oddly, she has the most trouble, we think, on cloudy days when the light is - screwed up or whatever (sorry, I've been on planes all day). The problem is most acute, of course, when we least expect it. We used to take the kids either to the Gulf of Mexico or the Atlantic every summer. loved the water but a doctor finallly pointed out that she was probably totally disoriented because of the colobomas and sun sensitivity when standing on the beach LOOKING at the water. It truly made her wobbly and miserable. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 I've been away for a few days and haven't gone through all posts yet, so I could just repeat what somebody else has written. has always been extremely photo-sensitive. She's now 20, and it took her years to wear sunglasses; she does so readily now. Earlier, we used wide brimmed hats, etc. Oddly, she has the most trouble, we think, on cloudy days when the light is - screwed up or whatever (sorry, I've been on planes all day). The problem is most acute, of course, when we least expect it. We used to take the kids either to the Gulf of Mexico or the Atlantic every summer. loved the water but a doctor finallly pointed out that she was probably totally disoriented because of the colobomas and sun sensitivity when standing on the beach LOOKING at the water. It truly made her wobbly and miserable. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 I've been away for a few days and haven't gone through all posts yet, so I could just repeat what somebody else has written. has always been extremely photo-sensitive. She's now 20, and it took her years to wear sunglasses; she does so readily now. Earlier, we used wide brimmed hats, etc. Oddly, she has the most trouble, we think, on cloudy days when the light is - screwed up or whatever (sorry, I've been on planes all day). The problem is most acute, of course, when we least expect it. We used to take the kids either to the Gulf of Mexico or the Atlantic every summer. loved the water but a doctor finallly pointed out that she was probably totally disoriented because of the colobomas and sun sensitivity when standing on the beach LOOKING at the water. It truly made her wobbly and miserable. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Forgive me if someone has already mentioned this as I don't get to read all the posts :-) Several years ago, mentioned the antioxidant Lutein and it's importance for eye health/light sensitivity. I know a family who has a child who was SEVERLY light sensitive - going outside was almost impossible - the drapes always had to be drawn and her father even went to far as to adapt dark welders goggles to fit her. I shared 's information with them as they were at the point that they would try ANYTHING, so they did. The results were life changing for this little girl and her family. Her light sensitivity decreased drastically so going outside is not an issue for them anymore. Bright lights, sunshine and glare is not the issue that it once was. They live a " normal " life thanks to lutein. They advocate the use of lutein strongly. Sally (I've started taking it) Here's what the luteininfo.com site says: Lutein (pronounced LOOteen) is a carotenoid, meaning a natural colorant or pigment, found in dark green leafy vegetables such as spinach, plus various fruits and corn. Egg yolks are also sources of lutein. Lutein has been linked to promoting healthy eyes through reducing the risk of macular degeneration and healthy skin. Why is lutein important in our diet? Simply put, lutein is an antioxidant that appears to quench or reduce harmful free radicals in various parts of the body. Free radicals can play a role in a variety of chronic diseases. Lutein also filters the high-energy, blue wavelengths of light from the visible-light spectrum. Blue light, in both indoor lighting and sunlight, is believed to induce oxidative stress and possible free-radical damage in human organs exposed to light, such as the eyes and skin. Blue light is not the same as the commonly known ultraviolet A and ultraviolet B wavelengths of the invisible spectrum. Most Americans do not get enough lutein in their diets. Research has suggested 6 to 20 mg of lutein per day are needed to realize its health benefits. Lutein is widely available?in doses up to 20 mg or more in a variety of nutritional supplements, fortified foods and beverages for people wanting to supplement their dietary intake of lutein. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Jo- Good for you for finding a creative solution! While he's little, folks will just think he's playing dress up. It's nothing unusual to see a kid in his cowboy boots, cape, or weird little hat, so why not goggles?? Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 time to break out that badge for him that says " i dressed myself " :0) he already has definate preferences over what to wear - loves stripy shirts and socks! Jo ----- Original Message ----- > Jo- > Good for you for finding a creative solution! While he's little, folks > will just think he's playing dress up. Quote Link to comment Share on other sites More sharing options...
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