Guest guest Posted July 3, 2005 Report Share Posted July 3, 2005 I wanted to know if anyone else is having the same problem my Sara has bilaterial colobomas and the doctor nocticed a problem with Sara's eyes the other day she exaimed her and said that the colobomas was getting worse and it was caused from the sun so she said Sara was going blind and there is nothing she can do for her except these drops and also have her stay inside or have very expenses sunglasses that medcaid wont pay for and a hat , she said that in about 2 yrs she may be totlally bling if anyone can help email me back also her doctor put her on a medicine for allergies and it is a appettie boaster and believe me she is eating alot now HAPPY 4 EVERYONE The Snows ton SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 HI ,MY DAUGHTER BIANCA HAS TO TRANSITION LENSE GLASSES ,SHE HAS BEEN WEARING THESE FOR SEVERAL YEARS NOW. THESE ARE SUPPOSE TO BLOCK THE SUN RAYS FROM HER EYES.SHE ALSO HAS BILATERAL COLOBOMAS. GET YOUR CHILD SUNGLASSES ASAP. IF I WERE YOU I WOULD HAVE YOUR EYE DOCTOR WRITE TO MEDICAID AND ASK THEM TO PAY FOR THESE BECAUSE THEY ARE MEDICALLY NECESSARY FOR YOUR CHILD NOT TO LOSE MORE VISION, I THINK IN THIS CASE MAYBE THEY MIGHT PAY FOR THESE GLASSES. GOOD LUCK AND KEEP ON FIGHTING SANDY ChasSCLady1@... wrote: I wanted to know if anyone else is having the same problem my Sara has bilaterial colobomas and the doctor nocticed a problem with Sara's eyes the other day she exaimed her and said that the colobomas was getting worse and it was caused from the sun so she said Sara was going blind and there is nothing she can do for her except these drops and also have her stay inside or have very expenses sunglasses that medcaid wont pay for and a hat , she said that in about 2 yrs she may be totlally bling if anyone can help email me back also her doctor put her on a medicine for allergies and it is a appettie boaster and believe me she is eating alot now HAPPY 4 EVERYONE The Snows ton SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 I didn't think colobomas as such were progressive, but is certainly very hit by sunlight (though overcast skies on otherwise bright, hot days may be the worst for her). Sunglasses are great, I agree, but try floppy hats, too, the kind with wide rims. I think these are a " must. " Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 I agree, if Makenna doesn't have her transition lenses on and a big floppy hat she won't even open her eyes outside. Both things are a must. I have even tried ball caps but she loves the floppy hats, she steals my sisters floppy hat if I have a ball cap on Makenna (so cute). Good luck. She wears the dark lenses and hats all year round, it doesn't have to be a sunny day, it seems that natural light is very difficult for her to handle. , Makenna's mom -- Re: Colobomas I didn't think colobomas as such were progressive, but is certainly very hit by sunlight (though overcast skies on otherwise bright, hot days may be the worst for her). Sunglasses are great, I agree, but try floppy hats, too, the kind with wide rims. I think these are a " must. " Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 As Martha has already said, the colobomas themselves are not a progressive condition. However, because of the colobomas the kids eyes are more sensitive and delicate that other's eyes. They are at risk for retinal detachments which can lead to blindness. Sunglasses and hats/visors are a must as the kids can be light/sun sensitive (not all are). I am concerned that you have a doctor who is predicting blindness--there is NO way to know that. I would quickly getting Sara to another ophthalmologist, bring the CHARGE stuff with you and collect all you can from the parents here. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2005 Report Share Posted July 4, 2005 Kennedy has transition lenses AND special super dark sunglasses (because you can't always count on her remembering to change to the dark ones, the transitions are a back up in case she goes out without changing). I find the transition still didn't get quite dark enough for her and she was still holding her hand over her right eye. They are covered by my medical insurance here in Canada (Blue Cross)... Also, I would get the big sun hats or a hat with ties underneath (Kennedy has a " Safari " hat with the ties underneath that you can tighten). I know the strings aren't in the whole safety world now, but I am thinking of her eyes and she isn't unattended climbing on monkey bars, etc ever so we let her wear the hat. Good luck with everything... Salazar wrote: HI ,MY DAUGHTER BIANCA HAS TO TRANSITION LENSE GLASSES ,SHE HAS BEEN WEARING THESE FOR SEVERAL YEARS NOW. THESE ARE SUPPOSE TO BLOCK THE SUN RAYS FROM HER EYES.SHE ALSO HAS BILATERAL COLOBOMAS. GET YOUR CHILD SUNGLASSES ASAP. IF I WERE YOU I WOULD HAVE YOUR EYE DOCTOR WRITE TO MEDICAID AND ASK THEM TO PAY FOR THESE BECAUSE THEY ARE MEDICALLY NECESSARY FOR YOUR CHILD NOT TO LOSE MORE VISION, I THINK IN THIS CASE MAYBE THEY MIGHT PAY FOR THESE GLASSES. GOOD LUCK AND KEEP ON FIGHTING SANDY ChasSCLady1@... wrote: I wanted to know if anyone else is having the same problem my Sara has bilaterial colobomas and the doctor nocticed a problem with Sara's eyes the other day she exaimed her and said that the colobomas was getting worse and it was caused from the sun so she said Sara was going blind and there is nothing she can do for her except these drops and also have her stay inside or have very expenses sunglasses that medcaid wont pay for and a hat , she said that in about 2 yrs she may be totlally bling if anyone can help email me back also her doctor put her on a medicine for allergies and it is a appettie boaster and believe me she is eating alot now HAPPY 4 EVERYONE The Snows ton SC Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 -- Our Garland has bilateral colobomas as well. He too is very sensitive to light and wears big floppy hats and sunglasses. He had surgery last week and while he was out his pediatric opthamologist looked at his retina and took several pictures of his eyes. He has a growth or spot on his retina and we are going to see a retina specialist next week. Your post reads as if your pediatrician is telling you that your Sara is going blind. I encourage you to get a referal to a pediatric opthamologist to get the most correct diagnosis for your daughter. If this is the case insist upon it. We too were told that our son was going blind by the pediatrician. We found a very good eye doc and he said just the opposite. We closely monitor his eyes and if we think something is up he goes to the eye doc. It will take a pediatric opthatmologist to give you the proper lens prescription for your daughters glasses. Someone who sees colobomas on a regular basis is better prepared to give the best diagnosis. Hopefully you the news wont be as bad. Colobomas are unforgiving and I dont want to give you false hope, but go to the specialist and get their opinion. Randy, Garlands Poppy - In CHARGE , ChasSCLady1@a... wrote: > I wanted to know if anyone else is having the same problem my Sara has > bilaterial colobomas and the doctor nocticed a problem with Sara's eyes the other > day she exaimed her and said that the colobomas was getting worse and it was > caused from the sun so she said Sara was going blind and there is nothing she > can do for her except these drops and also have her stay inside or have very > expenses sunglasses that medcaid wont pay for and a hat , she said that in > about 2 yrs she may be totlally bling if anyone can help email me back also her > doctor put her on a medicine for allergies and it is a appettie boaster and > believe me she is eating alot now HAPPY 4 EVERYONE The Snows ton SC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 i second that motion allthoughmy paed doctor has looked in m eyes if she thought something was off shed refer us to our optomoligist actualy we had a medic al student once diagnose cateracts and my paed came in and looked and went there isnt one we trusted her to know that if there was something shed of gone to the eye doctor but theytwo years ago they did find a small one so i dont know if it had been that hole time but second opinions best no patter how good the paed is > > -- > Our Garland has bilateral colobomas as well. He too is very > sensitive to light and wears big floppy hats and sunglasses. He had > surgery last week and while he was out his pediatric opthamologist > looked at his retina and took several pictures of his eyes. He has > a growth or spot on his retina and we are going to see a retina > specialist next week. Your post reads as if your pediatrician is > telling you that your Sara is going blind. I encourage you to get a > referal to a pediatric opthamologist to get the most correct > diagnosis for your daughter. If this is the case insist upon it. We > too were told that our son was going blind by the pediatrician. We > found a very good eye doc and he said just the opposite. We closely > monitor his eyes and if we think something is up he goes to the eye > doc. It will take a pediatric opthatmologist to give you the proper > lens prescription for your daughters glasses. Someone who sees > colobomas on a regular basis is better prepared to give the best > diagnosis. Hopefully you the news wont be as bad. Colobomas are > unforgiving and I dont want to give you false hope, but go to the > specialist and get their opinion. > > Randy, Garlands Poppy > > - In CHARGE , ChasSCLady1@a... wrote: > > I wanted to know if anyone else is having the same problem my Sara > has > > bilaterial colobomas and the doctor nocticed a problem with Sara's > eyes the other > > day she exaimed her and said that the colobomas was getting worse > and it was > > caused from the sun so she said Sara was going blind and there is > nothing she > > can do for her except these drops and also have her stay inside or > have very > > expenses sunglasses that medcaid wont pay for and a hat , she said > that in > > about 2 yrs she may be totlally bling if anyone can help email me > back also her > > doctor put her on a medicine for allergies and it is a appettie > boaster and > > believe me she is eating alot now HAPPY 4 EVERYONE The Snows > ton SC > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2005 Report Share Posted July 10, 2005 Was it that Sara had reduced vision in the sun? That is common - many children with CHARGE cannot see as well in sun and snow glare, both with retinal coloboma and iris coloboma so perhaps that is what the doctor meant. Unless the doctor is familiar with seeing coloboma (such as the eye doctors who frequent our residential school population); it is difficult to see changes, especially from just clinical examination of the eye. There is a new device tested in Vancouver which will give eye doctors a much better look at the retina. Most parents have reported only that detatched retina could be a future outcome for those who have large coloboma, but this is a sudden loss, and often can be reattached if found and treated within ~ 2 days. ann gloyn Education Specialist db/spec ed/vision Canada > > I wanted to know if anyone else is having the same problem my Sara > has > > bilaterial colobomas and the doctor nocticed a problem with Sara's > eyes the other > > day she exaimed her and said that the colobomas was getting worse > and it was > > caused from the sun so she said Sara was going blind and there is > nothing she > > can do for her except these drops and also have her stay inside or > have very > > expenses sunglasses that medcaid wont pay for and a hat , she said > that in > > about 2 yrs she may be totlally bling if anyone can help email me > back also her > > doctor put her on a medicine for allergies and it is a appettie > boaster and > > believe me she is eating alot now HAPPY 4 EVERYONE The Snows > ton SC > > > > > > Quote Link to comment Share on other sites More sharing options...
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