Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hi: Decided to de-lurk today. Our two-year-old daughter Naomi was diagnosed to have BPES when she was 3 months old. Will post her photos sometime soon. Since diagnosis, at the advice of her eye surgeon, we have been diligently taping her upper lids open with surgical tape (Micropore) whenever she is awake. The plan is to stay with the tapes until she is old (and large and co-operative) enough for surgery (estimated for 3-4 years old). Although, at first, taping sounds like a primitive method to keep the lids open, we found it a suitable non-invasive and simple temporary solution to helping Naomi see in her younger days. Lid taping has worked well for her. At her regular reviews with the eye surgeon, Naomi does not have clinical evidence of visual problems. Naomi has grown used to her tapes. She knows that she needs them to see properly, so much so that she will announce " eye tapes off " when the tapes come loose and her lids fall shut. Certainly, there would be lots of issues related to the comesis of tapes; we have come to terms with it as we feel that surgery when the tissues are more mature would show better results. Naomi is the only one in our extended families with BPES. We think hers is due to a new mutation. Which partially explains why it took me three months before realising that she had a problem. What my wife and I are really curious about is why no one else in this group talks about taping. Is it not a recommended alternative? Why is surgery advocated at such a young age (e.g., 6 weeks)? If the first surgery is just to get the lids open to allow visual development, wouldn't lid tapes be a viable (although a little inconvenient) alternative for the first few years? Ern C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Lid Taping; what a great idea. I never thought of that. Of course its too late for us now, we already had surgery but I wish I had known that earlier. I could have done that with and she wouldn't have had to go for a year with droopy lids. I can't believe more people haven't thought of such a thing. By the way your daughter is a cutie From: EC [mailto: ern_chang@...] blepharophimosis Date: Thu, 16 Dec 2004 16:54:07 -0000 Subject: blepharophimosis Lid Taping? <html><body> <tt> <BR> Hi:<BR> <BR> Decided to de-lurk today.<BR> <BR> Our two-year-old daughter Naomi was diagnosed to have BPES when she <BR> was 3 months old. Will post her photos sometime soon.<BR> <BR> Since diagnosis, at the advice of her eye surgeon, we have been <BR> diligently taping her upper lids open with surgical tape (Micropore) <BR> whenever she is awake. The plan is to stay with the tapes until she <BR> is old (and large and co-operative) enough for surgery (estimated <BR> for 3-4 years old).<BR> <BR> Although, at first, taping sounds like a primitive method to keep <BR> the lids open, we found it a suitable non-invasive and simple <BR> temporary solution to helping Naomi see in her younger days. Lid <BR> taping has worked well for her. At her regular reviews with the eye <BR> surgeon, Naomi does not have clinical evidence of visual problems.<BR> <BR> Naomi has grown used to her tapes. She knows that she needs them to <BR> see properly, so much so that she will announce " eye tapes off " when <BR> the tapes come loose and her lids fall shut.<BR> <BR> Certainly, there would be lots of issues related to the comesis of <BR> tapes; we have come to terms with it as we feel that surgery when <BR> the tissues are more mature would show better results.<BR> <BR> Naomi is the only one in our extended families with BPES. We think <BR> hers is due to a new mutation. Which partially explains why it took <BR> me three months before realising that she had a problem.<BR> <BR> What my wife and I are really curious about is why no one else in <BR> this group talks about taping. Is it not a recommended alternative? <BR> Why is surgery advocated at such a young age (e.g., 6 weeks)? If the <BR> first surgery is just to get the lids open to allow visual <BR> development, wouldn't lid tapes be a viable (although a little <BR> inconvenient) alternative for the first few years?<BR> <BR> Ern C.<BR> <BR> <BR> <BR> </tt> <br><br> <tt> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Hi! Yes, I have heard of lid taping, though I was trying to remember where I heard it from. My daughter's vision wasn't obstructed enough that she needed early surgery or taping, though we did patch one eye for about a year because that eye was lower than the other and had a tendency to become lazy. But I do definitely remember a discussion about taping, whether it was with her doctors or with another mom I talked with on the phone a couple of times. Anyway, I have heard of that being done; also, a doctor at Oregon Health Sciences has done a temporary stitch to hold the eyes open until later surgery as another alternative to early surgery. Best, Dawn Quote Link to comment Share on other sites More sharing options...
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