Guest guest Posted September 15, 2003 Report Share Posted September 15, 2003 Hi sara...I guess they don't have that prominant brow bone ha!...I hadn't thought of the accident prone side of it though!...our son ethan is 7 months old, we have posted 3 photos of him on the site under photos...check them out, do you have any of your wee son Baxter? would love to see them if you do:)...leanne blepharophimosis brow bone??? Thanks for your response . This is the first time I've been able to speak with others in the same situation and ask questions. I've learnt more in an hour reading the message board than I have in the last 3 mths.Another question I have is about the formation or lack of the brow bone. Is this common or just an individual thing in my son Baxter. His forehead comes straight down then inward with no obvious bone over his eyeball.With 4 other children and seeing the million and one ways they hurt themselves playing,it is worrying how often they bump themselves on the head. More often than not these bumps happen on their brow. With Baxter's eyeball area exposed as it, is I have real concerns about accidental bumps that could be very serious.We have an appt. with a surgeon in November to discuss details of what is to be done for him, but at this stage he has been very noncommittal any details. We are still very much in the dark about is actually involved with the surgery.We have also been told his is quite severe and surgery is recommended as early as possible. Baxter is 3 mths old now and we have been told he should have the surgery at 6 mths as there is a concern about the effect of anesthetic if he had surgery any sooner. Is anyone else in this situation.I hope I explained well enough to understand. If anyone has a clue what I mean I would love to hear. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi there! I’ve been researching Dr.’s lately and calling around to find out who does what type of surgery and when. I thought I would pass on what little I am getting in hopes that it helps. We went to a Pediatric Craniofacial Plastic Surgeon recently for . He said that his job was to fix the underlying bone structures that need repair. The craniofacial teams work a lot with cleft lip, cleft palate, and any other congenital (at birth) defects. ’s bone structure was developed okay so he said that we wouldn’t need that type of surgery. Then, he told me that we would need the “soft tissue” surgeon to address the blepharophimosis. I haven’t yet met with the “soft tissue” guys as they are hard to book time with. It sounds like your first surgery would be with someone like the craniofacial surgeon. As for the six months issue, a close friend of mine has a daughter that underwent some complicated bone surgery around her face and eye sockets around 6 months of age. They identified the need for surgery early but preferred 6 months to do the surgery because of the anesthesia like you said. On an upbeat note, her daughter is now 5 years old, beautiful, and has no worries. It is amazing what doctors can do these days. She came out of everything great. Once again, it is harder for the parents during these times than it is for the children. I do know of some craniofacial doctors in and around Atlanta, GA, and am working on the eye guys. I have talked with another person in this chat group that used Dr. Harvey Cole who is an oculoplastic surgeon and we are meeting with him soon. They are the only doctors office I have called that had heard of bleph so I am optimistic. I think you are in Australia if I remember your e-mails correctly so I’m not sure if that is much help. Well, I hope any of this helped! Congratulations on your new little one!! is now 5 months and I don’t think she counts as the new one anymore but 3 months certainly does. blepharophimosis brow bone??? Thanks for your response . This is the first time I've been able to speak with others in the same situation and ask questions. I've learnt more in an hour reading the message board than I have in the last 3 mths. Another question I have is about the formation or lack of the brow bone. Is this common or just an individual thing in my son Baxter. His forehead comes straight down then inward with no obvious bone over his eyeball. With 4 other children and seeing the million and one ways they hurt themselves playing,it is worrying how often they bump themselves on the head. More often than not these bumps happen on their brow. With Baxter's eyeball area exposed as it, is I have real concerns about accidental bumps that could be very serious. We have an appt. with a surgeon in November to discuss details of what is to be done for him, but at this stage he has been very noncommittal any details. We are still very much in the dark about is actually involved with the surgery. We have also been told his is quite severe and surgery is recommended as early as possible. Baxter is 3 mths old now and we have been told he should have the surgery at 6 mths as there is a concern about the effect of anesthetic if he had surgery any sooner. Is anyone else in this situation. I hope I explained well enough to understand. If anyone has a clue what I mean I would love to hear. Quote Link to comment Share on other sites More sharing options...
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