Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Dear Tracey, Thank you for responding, my husband has had the chance to cool off alittle bit now. I guess our biggest concern was waiting a year till someone would examine her eyes again. We were just wondering where Manitoba is? Once again thans for writting. Kathy and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Some people have no brains....... When Sullivan was born we were told the worst case with the colobomas was that he would be legally blind (whatever that is supposed to mean!!!!!) Lots of people in hospital didn't understand why we put toys in front of him, black and white pictures to develop eye muscle and co ordination etc etc etc......I know that Sullivan has a vision impairment, until he can tell me/us a determination of what the total impairment is cannot be made, I personally assumed the best. Guess what, Sullivan has a great fix and follow, he plays very well with his toys, loves books. Yeah, there are problems and challenges, but by assuming nothing, I have given him every opportunity to learn. Even now, at 16 months, people who have known him all along, see him play, and say " do you think he's blind " ......did I say some people have no brains? Sullivans pediatric opthamologist is the only one in Manitoba, he is a real you know what. Because the colobomas cannot be fixed by surgery, I have made a choice, that is best for my family (and therfore best for all of us)and am pulling Sullivan from his care and will take him to a regular opthamologist that sees lots of kids. Sullivan has had his eyes dilated about 4 times, we have never been told it will hurt, and Sullivan has never reacted as if in pain. Usually pissed off, but no pain. Not sure what this doc was talking about. You are going to run into lots of people with no personality, but with some effort you will find those that really listen and care and understand both the needs of the child and parent. Those are the professionals you need to seek out and find. Right now, you are going through a whole bunch of issues, and are hearing lots of information. Act on what you have to, and think about the rest. All the decisions don't have to be made now. The vision issue can't be " fixed " so give Lea every opportunity to develop, don't make assumptions. And in 6 months to a year find another opthamologist who listens, informs and cares. Your're asking lots of questions, and that is the best thing you can do. Make sure they give you answers back, that you can understand. Best of luck Tracey > Dear group > Lea had her eye doctor appointment today. We are now more lost and > confused than yesterday. The eye doc said that Lea has some vision but > she can't say how much. Also when Lea had her eyes dialated today the > doc said it would sting her, but she had no reaction. Also the doc > really brushed my wife off and said they can't do anything more and to > come back in a year. What do we do? I had to work and could not go > today, but when I got home and found out I wanted to make a beeline up > there and give that doc a few choice words of my own. What should we > do? Please help. > Angrily and worried, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 , First off, (if possible) get a new doctor that you are more compatible with. You are going to be working with these professionals for years to come (most of them) and you don't want someone brushing you off like that. Our first ophthamologist was like that and we got transferred right out of his caseload like that! We now have a woman we like very much who is very willing to take the time to listen to and address our concerns/questions. I didn't find the drops really stung Kennedy a lot, she was averse to getting held down to get them in, but fine as soon as we let her go. I'm sure that it is different for everyone. My daughter was followed by an ophthamologist from 2 months of age on, only about 2-3 times in the first year and it was while under sedation for another surgery that they really looked in well and made the prescription for her glasses which she got at 12 months of age. I think with coloboma, she should be followed up on a somewhat regular basis for sure. Never take an answer you don't like or a brush off, go and get another opinion if at all possible and find someone you're comfortable with. Good luck!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 We need help Dear groupLea had her eye doctor appointment today. We are now more lost andconfused than yesterday. The eye doc said that Lea has some vision butshe can't say how much. Also when Lea had her eyes dialated today thedoc said it would sting her, but she had no reaction. Also the docreally brushed my wife off and said they can't do anything more and tocome back in a year. What do we do? I had to work and could not gotoday, but when I got home and found out I wanted to make a beeline upthere and give that doc a few choice words of my own. What should wedo? Please help.Angrily and worried, 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 May 12, 2000 Report Share Posted May 12, 2000 Just wanted to let you know that our son , who is 14 months, has colobomas of the retina and optic nerve in both eyes. And our eye doctor also told us that it was possible that he would be declared legally blind at some point. But he has seen about 4-6 times in the past year and done several tests to see how much we could find out about his vision. I definitely think they give you the worst case scenario! Since is healthier and getting stronger, his vision has seemed to improve too. He is now tracking well and seems to see pretty well! He recognizes faces and his therapists can't see any signs of visual impairment at this time. Hope this gives you a little encouragement! Kristie Mom to -12, Lucas-7, Alyssa-5, a-3, and -1 We need help >Dear group >Lea had her eye doctor appointment today. We are now more lost and >confused than yesterday. The eye doc said that Lea has some vision but >she can't say how much. Also when Lea had her eyes dialated today the >doc said it would sting her, but she had no reaction. Also the doc >really brushed my wife off and said they can't do anything more and to >come back in a year. What do we do? I had to work and could not go >today, but when I got home and found out I wanted to make a beeline up >there and give that doc a few choice words of my own. What should we >do? Please help. >Angrily and worried, > > > >------------------------------------------------------------------------ >Remember four years of good friends, bad clothes, explosive chemistry >experiments. >http://click./1/4051/2/_/22564/_/958084512/ >------------------------------------------------------------------------ > >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 May 12, 2000 Report Share Posted May 12, 2000 - Boy, I'm not sure what to say. The replies from others on the list have been very helpful. Aubrie has seen the eye doctor the most often of them all, it seems. She has small colobomas in her right eye which do not seem to effect her vision. She has a large coloboma which goes from the iris to the optic nerve and reduces her vision in that eye considerably. We think she probably has peripheral vision only in that eye but it's hard to tell for sure since she's still only 2.5 years old. She had a hemorrhage behind her right eye at birth so that was followed closely. She also has a small cataract in that eye that seems to be in her blind spot so we haven't done anything about it yet. She developed glaucoma in that eye and had surgery. She has had trouble with blocked tear ducts and has several procedures done to open them up. So... I can't imagine going a year without seeing an eye doctor again. From my experience, there are too many things that can go wrong and need monitoring. Now, maybe the doc could see that there is no threat of any of these kinds of complications for Lea. But it seems like an exam under anesthesia could not hurt if it was coordinated with her next surgery or procedure with another specialist. I think I'd follow the advice of the others on the list and get a second opinion. You don't want to search for problems, but you sure don't want to miss anything. And I'd also get hooked up with your state's vision specialists for some practical advice on how to proceed with your daily life and her development. Good luck! Michele W mom to Aubrie (29 mos) CHaRgE and (8 yrs), wife to DJ, in IL west@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 - I should have added that Aubrie wears glasses with slight correction that really serve to protect her good eye from injury. She functions like a normally sighted person for the most part. She peers into small spaces with her good eye (it's totally adorable!). She has difficulty seeing things far away like birds and planes in the sky, boats on the distant water, barns and things out the car window... But she can find the smallest piece of lint on our oriental rug. Her eye-hand coordination seems difficult. She has problems with fine motor skills like stringing beads, peg boards, etc. I think her vision will become more of a problem as she gets older and goes to school. It's just now becoming apparent that her vision interferes with her fine motor skills and her mobility (she has a hard time with stairs and other changes in surface). It's very difficult to tell what a young child's vision is really like. Lea will, hopefully, amaze you and the doc's by using her vision better than they anticipate. It's very frustrating tho when you don't know what she is seeing and how well. Hang in there and get the advice of some vision specialists to help you. Michele W mom to Aubrie (29 mos) CHaRgE and (8 yrs), wife to DJ, in IL west@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 and Kathy, It is true, they can't really make a determination on vision when they are this young. I just keep stimulating. The more you can make them track the more they learn to use their eyes. I learned with Tryny (who not only has colabomas but Browns syndrome of the eyes as well) and he see's very well. We still don't know " what " he sees, if it is anything like we do or not, but he can see you sign, even if you're not signing to him and are beside him. So I do the same with Zak, keep stimulating him with toys and anything he seems interested in. And red, black and white seems to do the best job. Hang in there, all the information coming at you this early in Lea's life can be confusing, but that is what we are here for, to help you sort it out. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2000 Report Share Posted May 12, 2000 Hi! We heard a similar story when our son was born. We chose to provide lots of visual stimulation for him from the start. We wanted to stimulate what residual vision he had from the start. Black and white mobile as a newborn, then brightly colored mobile, and always lots for him to be interested in looking at. Today his vision is pretty functional in his non-blind regions, up close anyway. For example, he has been requesting that we sign the letters when he gives us pieces of Alpha Bits cereal and then he repeats them. Our philosophy is that the early years are crucial and we will take the time and effort to try to help in any area that might improve for him with therapy or whatever else he needs in order to give him the best possible outcome. We don't dwell on his blind regions, hearing loss, vesicureteral reflux, etc. However, we do concentrate on the things that we can change like make sure that he gets his prophylactic antibiotics for reflux, 1:1 intervenor, deaf-blind consultant and training, speech, physical, occupational, vision, orientation and mobility, and hippo therapies. One of the biggest challenges has been making sure that he is always with caring people who are able to communicate with him using sign language and we have been blessed with wonderful people thus far (two of the current people are studying or just finishing as speech therapists). In addition, we continue to learn more sign language, how to address sensory integration dysfunction issues, and are taking him to see Judith Bluestone in 2 weeks to learn what additional therapies he needs for 30 minutes each day. So far this has worked well and he is showing great progress. The good news is that it really does get easier to focus on these additional needs once you get past most of the critical medical issues by around 2 years of age. : ) Cheryl, , (6), (4, CHaRGE) MI >>> dbeaver@... 05/11/00 01:29PM >>> Dear group Lea had her eye doctor appointment today. We are now more lost and confused than yesterday. The eye doc said that Lea has some vision but she can't say how much. Also when Lea had her eyes dialated today the doc said it would sting her, but she had no reaction. Also the doc really brushed my wife off and said they can't do anything more and to come back in a year. What do we do? I had to work and could not go today, but when I got home and found out I wanted to make a beeline up there and give that doc a few choice words of my own. What should we do? Please help. Angrily and worried, ------------------------------------------------------------------------ Remember four years of good friends, bad clothes, explosive chemistry experiments. http://click./1/4051/2/_/22564/_/958084512/ ------------------------------------------------------------------------ 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...
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