Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi, As I wrote before I am from Turkey and have a 5 month old son born with bleph.Last week we went to our surgeon and he told us that there will be two operations.The first one is for epicantus and he will try to make the eyes more closer to each other.The second one will be the sling operation.Also these operations can start when he is 6 months old,he suggested us to do it before the age of 3,because he will start to go to school. As far as I read from your mails the epicantus operation is generally done after the slings or most people do not want to do this operation.I want to learn if your surgeons do this operation or not.Most of the people wait when their children are 5 or 6 years old.My son's eyes are not so bad so we can also wait but the surgeon says there is no difference between waiting or doing this op. as soon as possible. He also said that he does not prefer the tissue(I don't know the exact name in English) from the leg,he prefers silicone because it is a materal that they can do changes in the future if there's something wrong but can not do it with the one from the leg. Please can you write your experiences and opinions. Thank you PINAR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hello Pinar My son Aedan is now 6. He had sling surgery done at 10 weeks because his pupils were blocked by his ptosis (drooping eyelids) and he would not develop good vision with this blocked. The other surgery, epicantus, in his case is really cosmetic and we have not done it. His surgeon that did the operation at 10 weeks thought we might no want to do it all. We are still waiting and now at his age he would be a part of the decision to change his look. In a message dated 3/17/2009 7:45:07 P.M. Eastern Daylight Time, pinarsanri@... writes: Hi,As I wrote before I am from Turkey and have a 5 month old son born with bleph.Last week we went to our surgeon and he told us that there will be two operations.The first one is for epicantus and he will try to make the eyes more closer to each other.The second one will be the sling operation.Also these operations can start when he is 6 months old,he suggested us to do it before the age of 3,because he will start to go to school.As far as I read from your mails the epicantus operation is generally done after the slings or most people do not want to do this operation.I want to learn if your surgeons do this operation or not.Most of the people wait when their children are 5 or 6 years old.My son's eyes are not so bad so we can also wait but the surgeon says there is no difference between waiting or doing this op. as soon as possible.He also said that he does not prefer the tissue(I don't know the exact name in English) from the leg,he prefers silicone because it is a materal that they can do changes in the future if there's something wrong but can not do it with the one from the leg.Please can you write your experiences and opinions.Thank youPINAR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Hi Pinar, Our son Ethan (pics in pumpkin suit) is 6 years old and just had his first surgery....He did the sling surgery not the epicanthus...He said just lifting his top lid up should be fine for Ethan...He did use his Fascia Lata (leg tissue) and prefers to do so as the body does not reject it as it is the bodies own tissue, he also said that you can go in 10 years down the road and the fascia will be just the same as it was when you put it in...He has always told us to wait as long as you can for the surgery as the childs face changes and grows so much over the years therefore getting a better result. Ethan was just fine compensating by raising his eyebrows, never tilting his head thank goodness:) We have good friends here in Christchurch that also have the eye condition, a the mum has it and both her children do as it runs in her family. Saskia is 6 and has had no ops and Josh is 10 years and is about to have his first surgery in July. Josh the 10 year olds eyes are a little more closed than Ethans yet never needed glasses and is a very bright little boy...We have also meet a mother and daughter with it and the daughter who was 18 at the time we meet had never had any ops and she was fine, so it just shows you can go through life without having any surgeries for it but each person is different. Our opthalmologist has seen Ethan since he was a baby and said that because he was tall enough now we could go ahead with the surgery and use his own Fascia lata (as you cannot use it until it is long enough)....We had it 10 days ago and he is doing great...I will add some b4 and after shots on our album at the site. So I guess what I'm trying to say, is don't rush it if it's not needed! Especially as a baby...We are so happy we waited until Ethan was older, and it hasn't affected him at all, he wears glasses for an astigmatism but we can't say whether that's from the bleph or not as having an astigmatism is VERY common among anybody??? I will go add the new photos...talk again soon, Leanne and family NZ -- Re: blepharophimosis operations Hello Pinar My son Aedan is now 6. He had sling surgery done at 10 weeks because his pupils were blocked by his ptosis (drooping eyelids) and he would not develop good vision with this blocked. The other surgery, epicantus, in his case is really cosmetic and we have not done it. His surgeon that did the operation at 10 weeks thought we might no want to do it all. We are still waiting and now at his age he would be a part of the decision to change his look. In a message dated 3/17/2009 7:45:07 P.M. Eastern Daylight Time, pinarsanri writes: Hi,As I wrote before I am from Turkey and have a 5 month old son born with bleph.Last week we went to our surgeon and he told us that there will be two operations.The first one is for epicantus and he will try to make the eyes more closer to each other.The second one will be the sling operation.Also these operations can start when he is 6 months old,he suggested us to do it before the age of 3,because he will start to go to school.As far as I read from your mails the epicantus operation is generally done after the slings or most people do not want to do this operation.I want to learn if your surgeons do this operation or not.Most of the people wait when their children are 5 or 6 years old.My son's eyes are not so bad so we can also wait but the surgeon says there is no difference between waiting or doing this op. as soon as possible.He also said that he does not prefer the tissue(I don't know the exact name in English) from the leg,he prefers silicone because it is a materal that they can do changes in the future if there's something wrong but can not do it with the one from the leg.Please can you write your experiences and opinions.Thank youPINAR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2009 Report Share Posted March 18, 2009 Hi Pinar, It's rare for surgeons to perform the blepharophimosis repair on infants; they usually wait until just before school. They may perform the sling operation to address ptosis on infants, but only if the ptosis is affecting sight. Otherwise, they usually wait until after the bleph repair (or occasionally do both at the same time). Here's an authority: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene & part=bpes#bpes.Managemen\ t (See 'Treatment of manifestations' section) I always get at least two or three opinions, especially if one doctor's advice seems unusual. Silicone is a common sling material these days, especially for infants. Rob W Oz PINAR SANRI wrote: > Hi, As I wrote before I am from Turkey and have a 5 month old son > born with bleph.Last week we went to our surgeon and he told us that > there will be two operations.The first one is for epicantus and he > will try to make the eyes more closer to each other.The second one > will be the sling operation.Also these operations can start when he > is 6 months old,he suggested us to do it before the age of 3,because > he will start to go to school. > > As far as I read from your mails the epicantus operation is generally > done after the slings or most people do not want to do this > operation.I want to learn if your surgeons do this operation or > not.Most of the people wait when their children�are 5 or 6 years > old.My son's eyes are not so bad so we can also wait but the surgeon > says there is no difference between waiting or doing this op. as soon > as possible. > > He also said that he does not prefer the tissue(I don't know the > exact name in English)�from the leg,he prefers silicone because it is > a materal that they can do changes in the future if there's something > wrong but can not do it with the one from the leg. > > Please can you write your experiences and opinions. > > Thank you > > PINAR Quote Link to comment Share on other sites More sharing options...
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