Guest guest Posted September 16, 1997 Report Share Posted September 16, 1997 Hi , thanks for replying. I will have to remember to ask the specialist if surgery is permanent or not when I go in Nov, and will let you know what she says. She really didn't give me much information at all about Duanes. However, she said that as far as she knows it's not linked to bpes, but apparently she's going to research it some. After I got home this morning from our appointment, I looked up and joined the Duane's Group in hope for some more information. If it's anything like this group, I'm sure it will be most helpful. On a very quick research, I read that with Duanes, one can have double vision. We are wondering how we would know in a 9 months old if this is the case. Did/does your son have this? It is all very mind boggling at the moment, but I am happy to email you direct with information as I find it that may be of use to you, or you can email me at bobjnr@... with any info, that would be great. I noticed about 4 weeks ago that Alyssa was closing one eye,hence I made an appointment. There was no indication of this before recently. She did say that Alyssa has Bilateral (both) Duane's Retractive syndrome and that at this stage she is using both eyes equally. Thats about all I know. Do let me know how you are going with all your surgeries/info etc. Thanks heaps. Re: blepharophimosis Fw: Duannes & BPES , My son Garrett had Duanne's Retraction Syndrome and had surgery for it about 2 yrs ago. From my understanding of what the doctor said was that the muscles that connect to the eyeball itself was either too tight or too loose. He said you wouldn't be able to tell until you actually went in to do the surgery. My sons eyes wouldn't turn outward very much. I can't remember now which was the case with Garrett. I did notice that he could "roll" his eyes around better after the surgery, but now it seems like has has went back to looking sideways again. When he's watching tv his head will be turned to the left a little. He was only using one eye to see and we had been patching for a few years. Finally we switched eye doctors and she gave us some eye drops to blurr his vision. When he went back for his check-up we were told that he was using both eyes equally to see. Just doesn't seem to be the case anymore. Maybe he just can't see out of that eye, or maybe he just had the surgery for the Duanne's too late, who knows. What has the doctor said about the Duanne's? I don't think it's related to BPES, neither of his doctors said that it was part of it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 , My son Garrett had Duanne's Retraction Syndrome and had surgery for it about 2 yrs ago. From my understanding of what the doctor said was that the muscles that connect to the eyeball itself was either too tight or too loose. He said you wouldn't be able to tell until you actually went in to do the surgery. My sons eyes wouldn't turn outward very much. I can't remember now which was the case with Garrett. I did notice that he could "roll" his eyes around better after the surgery, but now it seems like has has went back to looking sideways again. When he's watching tv his head will be turned to the left a little. He was only using one eye to see and we had been patching for a few years. Finally we switched eye doctors and she gave us some eye drops to blurr his vision. When he went back for his check-up we were told that he was using both eyes equally to see. Just doesn't seem to be the case anymore. Maybe he just can't see out of that eye, or maybe he just had the surgery for the Duanne's too late, who knows. What has the doctor said about the Duanne's? I don't think it's related to BPES, neither of his doctors said that it was part of it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 Hi Rob and !...Leanne here, down in Christchurch, how have you guys been?...good we hope:)...How is your wee Alyssa doing? Just read about her having Duanes Syndrome!...So you havn't been told if its linked with the bleph?...what actually is it?...What do they do to fix it?...Its so scarey reading all these other things that are linked to having bleph! The one that scares me the most is what people have written on the retardation!!! I can't even imagine it!...Ethan is soooo happy, he is 71/2 months now, nearly crawling! on all fours , actually took 3 steps forward today (crawling).......he's finally sittng up tall as anything:)...Today I held him under his arms and supported him to walk, and to my surprise, he actually took steps, as if he was ready to walk off on his own!!!...gosh a bit ealy for all that...god help me, having him and his 4 year old terror of a brother running around hehe:)...Do you have any more pix yet??? would LOVE to see, we have posted 3 pics of ethan etc...did you see them?...my favourite one is the one in his white gown, had that done at beverly studios, actually juust had his 6 month pics done there a few weeks ago, anyway better run, ethans starting to get upset, poor wee guy just getting over an ear infection:(...was only grumpy for 2 days with it luckily!...anyways take care...Leanne Duannes & BPES Our daughter Alyssa now 9 Mths old diagnosed with BPES at Birth, has just been diagnosed now with Duannes Syndrome as well. Can someone tell me is this linked with BPES? I would also like to know more about it....what exactly is it? and will she require surgery? Is it possible that it will worsen? Your help would be much appreciated. This new diagnosis has completely thrown us. Thanks, Quote Link to comment Share on other sites More sharing options...
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