Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 Hi everyone! I have some questions about colobomas and thought you all might could help me. My son, Landon is 4 years old. He was diagnosed with CHARGE when he was 5 months old. He was born with scar tissue that covered both eyes, but has since gone away. When he was 3 weeks old, he was put to sleep so that the optho. and cornea specialists could get a better look at his eyes. They confirmed that he has coloboma shaped pupils in both eyes and a " hint " of a cataract in both eyes that could only be seen in the operating room under the high powered microscopes. I was told that none of this would effect his vision. Luckily, he has not had to have glasses and the doctors are not concerned about his vision. He is not talking yet, so he cannot tell us how he sees. I can assure you it does seem that his vision is okay though. He doesn't miss a thing! I did not realize that there were different types of colobomas until I read some of your e-mails. Since we have to go back to the optho. soon, I was wondering if you all had any suggestions as to what other questions I might need to address with him. I guess I was pretty naive about things until I became a member of this group. You all are definitely the experts! Also, how does having coloboma shaped pupils effect a persons vision? Could it possible effect Landon's depth perception? He has a tendency to freak out when we are on the pier and he is looking up under the roof of the boathouse, when we are swinging and he looks up at the leaves, and when we walk into a gymnasium. I can't figure that out. Any ideas or suggestions would be greatly appreciated. Thanks! ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 , Patty has both types of Colobomas. Her left eye has the coloboma from the pupil all the way into the optic nerve. When a baby is forming inside the womb the eye develops in three parts. I was explained that the coloboma is due to that part not coming together. I actually think it looks special, kind of like an old fashioned key hole. My brother calls it a tear drop. Her right eye has a colobma in the back where her rods and stuff are. Where she is missing this it gives her a field loss. OK, here goes the long story. When she was a baby we were told she would be blind in the left eye. Then a while later they found the right one and we were told she was basically totally blind. Then, we were told, oh no, she's only blind in the left and seems to have vision in the right. Because she only had vision in one eye and didn't seem to focus on things as a baby I did all I could to stimulate her vision. The first colors babies see are red, yellow and blue so I got everything with just those colors and would do things like pass them in front of her face slowly, but not too close. When laying in her crib I hung ballons-only 3- from the ceiling for her to look at. (Which were well out of arms length for both her and her sister) She didn't like mobiles. We tried everything. She hated silver and shiny things. She also hated going outside. Now I know it was because light bounces in her eye differently. Doctors never really knew and diagnosed her with 20/200 vision in the right. I was always told no glasses, nothing could be done, etc, etc.... I went to different eye doctors. Then around age 3 one of them told me to patch her GOOD eye. I thought he was an idiot but was glad we tried. When we patched her we didn't think she could see anything at all until her sister had M & M's on a table. You see, Patty loved them. Patty had her head cocked and her eyes were headed elsewhere but grabbed one. Then she did it again. That is when we knew she had perefial vision in her " bad eye " although now I know that it is only vision which is shadowy, blurry-directly in front of her is totally blank and her perefial vision starts around where her ear to nostril points at. Whatever, but it's there. The coloboma on the right is on the bottom portion of the eye so this gives her some upper field loss. When she was little she would hold her head in a weird position to see, cocked back and tilted. This was like I saw SO Many other CHARGE babies do in Texas! Then we went to a doctor that said she had near normal vision in the right. Then, around 4th to 5th grade we went to yet another doctor and found she needed glasses, though her eyesight was still in normal ranges. When Patty started to wear them she seldom went without them. Still more doctors, still more different diagnosis's but these were regular normal eye doctors. Finally, and ABSOLUTELY most importantly we went, just this year, to a pediatric eye doctor with experience in Colobomas and found her glasses were wrong. He fixed the prescription. He also, after 15 years, explained things so much clearer to me than ever before. She still has the perefial vision but is basically blind in the left and her vision in the right is something like 20/80 or 90-I don't have the numbers in front of me and can see things close but not far away, I think that is myopic but I get that word messed up. The most important thing was that because Patty's coloboma involves the optic nerve she is basically blind in the left so does not see depth. Two eyes together make things sort of 3 D, vision in only one makes things look more like a photo. No one ever taught her anything to deal with this, she taught herself. She has learned every thing by her own unique experience of things. Sometimes it can be scary but we let-sometimes make-her try things (within reason) on her own. Going up and down stairs was the hardest. She still has a hard time knowing when she is on the last step. Going down is what is most difficult. And escalators were terrible, even when holding her arm saying one, two, three, step. She stopped holding someone only about two years or so ago and only because she is older wants independence, she still is not comfortable with that but she does it. Through her own experiences she has learned or made her own modifications. She has always seemed to have gotten around safely. Seldom did this give her a problem, except for walking into a few people or walls every now and then, until now. She wants independence but for the first time because she does not have depth perception I realize how important Orientation and Mobility is when they are older to be able to get around alone in a strange world safely. To make this totally long story short, all parents out there of little ones, get in touch with a vision specialists who can help you to FIND AN EYE DOCTOR WHO HAS EXPERIENCE, NOT JUST KNOWLEDGE, OF COLOBOMAS. It always amazes me how well Patty does. I'm telling you, you should see this kid. She's cool! I do have to say that for Patty her visual loss has had less impact than her hearing loss. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 , I would just ask them exactly what you are asking us about the depth perception, etc. I have heard of other kids having depth perception problems. There was a little boy I met while Kennedy was in hospital who was older (5) and he had CHARGE and if he came to 2 different floors (ie - hardwood floors switching to cushion floor) he would have to get down and feel across where the 2 floors joined before he would walk across it. Anyway, good luck with the opth. let us know how it goes... Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 re: colobomas Hi everyone!I have some questions about colobomas and thought you all might could help me.My son, Landon is 4 years old. He was diagnosed with CHARGE when he was 5 months old. He was born with scar tissue that covered both eyes, but has since gone away. When he was 3 weeks old, he was put to sleep so that the optho. and cornea specialists could get a better look at his eyes. They confirmed that he has coloboma shaped pupils in both eyes and a "hint" of a cataract in both eyes that could only be seen in the operating room under the high powered microscopes. I was told that none of this would effect his vision. Luckily, he has not had to have glasses and the doctors are not concerned about his vision. He is not talking yet, so he cannot tell us how he sees. I can assure you it does seem that his vision is okay though. He doesn't miss a thing! I did not realize that there were different types of colobomas until I read some of your e-mails. Since we have to go back to the optho. soon, I was wondering if you all had any suggestions as to what other questions I might need to address with him. I guess I was pretty naive about things until I became a member of this group. You all are definitely the experts!Also, how does having coloboma shaped pupils effect a persons vision? Could it possible effect Landon's depth perception? He has a tendency to freak out when we are on the pier and he is looking up under the roof of the boathouse, when we are swinging and he looks up at the leaves, and when we walk into a gymnasium. I can't figure that out. Any ideas or suggestions would be greatly appreciated.Thanks!________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.comFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 The strangest thing happened to me today....I went to my 3rd cousin's wedding and I went up to introduce myself. I looked into her eyes and I think she has colobomas!!! Hannah has them in her optic nerves so I am not as familiar as with the iris ones...you guys can help!!! They looked kinda like cat's eyes pupils. I had to try and do research at the wedding...her mom said " oh she has cats eyes " and started laughing. Then said " I don't know the medical name...but they are like keyholes and they are heretitary and her eyes may be sensitive to light. " Now doesn't that sound like something we have all heard??? This just is driving me nuts... Then I thought.......this could be a connection to CHARGE and this girl doesn't have a clue about it...should she be aware of it?? I sometimes find myself so involved and try to understand everyone else isn't....BTW, her ears looked normal!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 Hi , Yes, she must have iris colobomas. My son Jack has them in both eyes and they do make him sensitive to light. I know a little girl who has iris coloboma and nothing else so it can happen without any other defects. Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 , I have a friend whose little girl has colobomas in both eyes (she is blind) and there are no other defects. I don't think it's really common per se but it does happen by itself at times. Mom to Kennedy 2yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 colobomas The strangest thing happened to me today....I went to my 3rd cousin's wedding and I went up to introduce myself. I looked into her eyes and I think she has colobomas!!! Hannah has them in her optic nerves so I am not as familiar as with the iris ones...you guys can help!!! They looked kinda like cat's eyes pupils. I had to try and do research at the wedding...her mom said "oh she has cats eyes" and started laughing. Then said "I don't know the medical name...but they are like keyholes and they are heretitary and her eyes may be sensitive to light." Now doesn't that sound like something we have all heard??? This just is driving me nuts... Then I thought.......this could be a connection to CHARGE and this girl doesn't have a clue about it...should she be aware of it?? I sometimes find myself so involved and try to understand everyone else isn't....BTW, her ears looked normal!!! For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 : Sounds like iris coloboma. There have been so many on the list that have mentioned about one or two things in CHARGE appearing in one of their relatives. I'm sure Meg has said before on the list that Coloboma on its own is hereditery. At Houston they presented cases where it also appeared with kidney problems. Ann Gloyn, Canada mshrg1@... wrote: > > The strangest thing happened to me today....I went to my 3rd cousin's wedding > and I went up to introduce myself. I looked into her eyes and I think she > has colobomas!!! Hannah has them in her optic nerves so I am not as familiar > as with the iris ones...you guys can help!!! They looked kinda like cat's > eyes pupils. I had to try and do research at the wedding...her mom said " oh > she has cats eyes " and started laughing. Then said " I don't know the medical > name...but they are like keyholes and they are heretitary and her eyes may be > sensitive to light. " Now doesn't that sound like something we have all > heard??? This just is driving me nuts... Then I thought.......this could be > a connection to CHARGE and this girl doesn't have a clue about it...should > she be aware of it?? I sometimes find myself so involved and try to > understand everyone else isn't....BTW, her ears looked normal!!! > > > ------------------------------------------------------------------------ > Life's too short to send boring email. Let SuperSig come to the rescue. > http://click./1/6818/2/_/22564/_/964322018/ > ------------------------------------------------------------------------ > > For information about the CHARGE Syndrome > Foundation or to become a member please > contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2000 Report Share Posted July 25, 2000 hello and Elaine, sorry to eavesdrop but My son has coloboma in both eyes. luckily, he will have vision impairment in only one eye. We originally thought it to be much worse. How's life in Scotland? Always wanted to go. ken --- JMurraybel@... wrote: > Hi , > Yes, she must have iris colobomas. My son Jack has > them in both eyes and they > do make him sensitive to light. I know a little girl > who has iris coloboma > and nothing else so it can happen without any other > defects. > > Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE > Dumfries,Scotland > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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