Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 Hello Lise, I am and I live in Porto, Portugal. Like you I have three children (boys) and the youngest (Danny) is the only one in our family who has BPES. Danny is going to be seven years old next month and he has not had any surgery yet. He is a very happy boy and very sociable. As far as I have understood, the reason for having surgery at different times has to be with how much the pupil is covered which could affect the development of the vision. In Danny 's case his vision was checked every six months and the conclusion was that it was not being affected. So the doctor's advice was to leave it for as late as possible so his features are more definite. We have consulted doctors in Portugal and in England and their opinions were very similar. From what I have read if there are any signs that the vision is being affected ,then the child should have surgery as soon as possible, if not the recommended age for surgery is just before the child enters school, for social reasons. However we chose not to operate Danny yet because we see no sign of him being affected by this condition. These are two sites that Shireen recommends for finding information about BPES: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=Qa2lhK23j-IhW & gry= & fcn=y & fw=Gjoa & filename=/profiles/bpes/index.html http://www.emedicine.com/ent/topic97.htm I hope this helps you. -----Oprindelig meddelelse----- Fra: notify [mailto:notify ] På vegne af sylvester2603 Sendt: 9. juli 2006 00:03 Til: sbjoglise.jensen@... Emne: Confused?! I have now been reading all your answers and I`m a little confused. some of you write that your kids have surgery before they are 1 year old and some when they are about 3 or even older. how do we know when the right moment has accured? I know he can see, but has to tilt his head a lot. And he sleeps a lot, I think it is because he cant se very well. we go to check-ups often, but I dont think we get much information. they have taken some blod-test, but it takes forever to get the results, because they have to send them abroad. It`s like there is no history for them to look back on. they ask us a lot of questions, but I dont have the answers. and i can not find any one in Denmark with this same condition. we really feel alone with this, so I`m glad that I havd found you all. now I know that we are not alone. thanks. I still think that my baby-boy is georgeus, but I miss that eye-contact. he has an older brother and sister, they dont have BPES. Could it be, that we (the mothers) are old when we give birth? I would love to know why this happens right out of the blue? thanks again. Lise. -- da Conceição Hogg Escola Superior de Biotecnologia Universidade Católica Portuguesa Rua Dr. Antº. Bernardino de Almeida 4200-072 Porto Portugal T: 351-225580001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 On Tue, 2006-07-11 at 22:06 +0200, Lise & Søren wrote: > I have now been reading all your answers and I`m a little confused. > some of you write that your kids have surgery before they are 1 year > old and some when they are about 3 or even older. how do we know > when the right moment has accured? If the ptosis is blocking sight, or head-tilting is affecting balance or the neck or whatever, doctors will usually fix it immediately. Otherwise, they'll wait until the face has grown more (but before school), so it can be a more 'final' result. I had mine fixed when I was 6 or 7. Some people never have theirs fixed - they just get used to the head-tilting. > I know he can see, but has to > tilt his head a lot. And he sleeps a lot, I think it is because he > cant se very well. Head tilting is very common with ptosis. As long as he can see well enough that his sight develops OK, they will wait. But if they think his sight is not developing normally, the ptosis should be repaired straight away. > we go to check-ups often, but I dont think we get > much information. Perhaps other doctors might know more and help more. Finding doctors who are good enough to treat BPES is hard; they are very rare; I always look around and get second/third/... opinions. > they have taken some blod-test, but it takes > forever to get the results, because they have to send them abroad. Don't worry too much about the blood tests. All they mainly say is " Yes, he has BPES " , which you already know, and whether it's Type I or Type II, which is less important for boys than for girls. > It`s like there is no history for them to look back on. they ask us > a lot of questions, but I dont have the answers. and i can not find > any one in Denmark with this same condition. we really feel alone > with this, so I`m glad that I havd found you all. now I know that we > are not alone. thanks. It's rare enough that almost all of us never meet another BPES-enhanced person in our lives (except through this group), and the same for almost all doctors. Some people go abroad to see BPES experienced doctors, so you might consider that if there are none in sunny Denmark (say hi to " our " for me). There are plenty in England - that's not so far? Rob W Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 hi there i had replied to an earlier post that you had posted back in june but i was not sure if you saw it, so here it is again.... Hi there, my son lynden is 8 years old and he is the first in our family to have BPES too, the best advice that I or anyone can give you is to talk to your doctor, then get a second opinion if you are unsure, a third opinion if you are still unsure.... my son was 5 weeks old when he had his 1st surgery, that was due to how severe his BPES was. ususally the doctors decide when to do surgery based on how the childs vision is affected, if right now your sons vision is unaffected by the "droop" then they usually opt to wait, where in my case lynden could not see enough to wait for if he had his vision would have been severely affected. the other factors are that it depends on where you live and who does the surgery. we were very fortunate (we live in canada) we have a doctor right in our city that specializes in BPES surgeries. i hope that answers some of your questions..... second opinions are the key Tonikka and Chris -----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of Lise & SørenSent: July 11, 2006 2:07 PMblepharophimosis Subject: blepharophimosis VS: Confused?! -----Oprindelig meddelelse-----Fra: notify [mailto:notify ] På vegne afsylvester2603Sendt: 9. juli 2006 00:03Til: sbjoglise.jensenget2net (DOT) dkEmne: Confused?!I have now been reading all your answers and I`m a little confused. some of you write that your kids have surgery before they are 1 year old and some when they are about 3 or even older. how do we know when the right moment has accured? I know he can see, but has to tilt his head a lot. And he sleeps a lot, I think it is because he cant se very well. we go to check-ups often, but I dont think we get much information. they have taken some blod-test, but it takes forever to get the results, because they have to send them abroad. It`s like there is no history for them to look back on. they ask us a lot of questions, but I dont have the answers. and i can not find any one in Denmark with this same condition. we really feel alone with this, so I`m glad that I havd found you all. now I know that we are not alone. thanks. I still think that my baby-boy is georgeus, but I miss that eye-contact. he has an older brother and sister, they dont have BPES. Could it be, that we (the mothers) are old when we give birth? I would love to know why this happens right out of the blue? thanks again.Lise. Quote Link to comment Share on other sites More sharing options...
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