Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 We live in Purmerend, about 12 km north of Amsterdam, Holland. When our son, 32 and BPES went to his housedoctor with 3 months and BPES, the doctor said I'm in this business for over 40 years and in my life I met 2 people with this syndrom; you and your daughter. My advice; go and find experienced doctors for Kenley it's worth it! regards, Dolph Heideman blepharophimosis Kenley Kenley lives in Alabama U.S.A. WE are currently using UAB hospital for all of her needs. However no one there has much experience dealing with this syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 my son Lynden is 7 years old and had his 1st surgery at 5 weeks old and I do not regret a thing, I was fortunate to have an eye specialist (ophthalmologist/surgeon) who has dealt with BPES numerous times in his career, we live here in Edmonton Alberta Canada and our doctor has operated on many families that span through Canada and some families in the states. the minute he saw my son he slapped his knee and said "this is perfect timing I am teaching a class at the university about BPES and have not been able to get good pictures" so of course he snapped away before and after.... my son was diagnosed in end of December and operated on 1 week later.if you look in the pictures under lyndens pictures the 1st and I think 3rd picture show how much he could open his eyes. I was also told that up here in Canada the operations depending on severity of BPES is more of a must due to the dry climate. regarding lyndens eye sight... when he was born he was tested at 20/20 vision but just this last fall his eyesight has decreased dramatically and now he wears a +4.50 and a +5 pair of glasses (but they do make his eyes look bigger) the eyeglass place said if his prescription goes up he too will have to get them special made. anyway Dr (his eye specialist) said that in his experience with the syndrome it is very common to have a decrease in sight especially when you have not had surgery due to the constant eye strain and of course he has said he saw some patients with no change in eyesight at all with or without surgery, according to him it is about 50/50 with BPES patients. I do recommend second and third fourth and 5th opinions if you are not sure about the doctors , fortunately I did not have to do that because of his experience again unfortunately we live in Canada. anyway I am so glad you were blessed with your little angel kenley(cute name) and keep smiling everything will fall into place if you have any questions ask away... hope this helped a bit (sorry for such a long post) always Tonikka, lynden, chris and hunter -----Original Message-----From: kenleyejp [mailto:kenleyejp@...]Sent: January 22, 2005 8:41 AMblepharophimosis Subject: blepharophimosis KenleyKenley lives in Alabama U.S.A. WE are currently using UAB hospital for all of her needs. However no one there has much experience dealing with this syndrome. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 HI, Has Kenley been diagnost with anything at this point ? I would get many opinions and from various fields of doctors too. Sometimes one dr. is more familiar because they have dealt with it before. As I seemed to have learned medical school is for the "average" illness...everything else is learned thru years of expierence and seeing it for themselves. Most of all our doctors example : My Ob/Gyn, Our Genetic Dr. , Or Peditrician...have never heard or deal with this. To me that is scary but it is a rare condition....Seek and you shall find...I have come up with a great group of childrens doctors for the kids ..all who are familiar with their condition .Good Luck kenleyejp <kenleyejp@...> wrote: Thank you for all your response. However, now I have even more concerns. I have always liked Kenleys eye dr however he has never mentioned this syndrome in all the times he has seen kenley. It was not until going to the genetics clinic that we were told of this. Of course Kenley has teh eye problems as well as lung probs, thin brittle hair, small teeth. The list goes on. My question now is how do we go about finding a dr that knows what they are doing in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2005 Report Share Posted January 24, 2005 How wonderful for Kenley that she has found a home with loving parents. My dad and my grandfather have BPES and so do I and my 5 month old daughter. It really does seem that every case is different, my dad for example couldn't believe that anyone who has BPES wouldn't need to wear glasses. I wear glasses but mostly I wear them because my left eye is "lazy". I can see fine without them and always have ( I am 34). My grandfather never had surgery and he had a high school diploma, vocational training, was intelligent, etc., My dad had one surgery when he was a year old, and has been fine. I had my first when I was 10 months, my baby had her first at 6 weeks but it didn't really work so great due to probably stupidity of the surgeon recommended to us. ( I blame myself for this, another long story, sigh). Kenley's vision is poor and that is one thing that can be addressed, the cosmetic part can be addressed, you just have to find the right doctor, we finally found one we trust at DC Children's Hospital. You will know the person when you meet him or her. You will probably have to travel. Kenley makes me think of my grandfather, he was the first person in my family to have BPES, of course no one knew that's what it was. His mother died when he was two or three, his father remarried and had a bunch more kids, all normal. At some point they decided to put him in an orphanage, while his father and stepmother raised the other children. My grandfather never even had glasses. He was about 10 and worked in a bowling alley, setting up pins, this was in the 1920s. A man who befriended him there took him to an eye doctor, got him glasses and then adopted him. He was raised with that family until he was 18. He never got over his shame or rejection, tried to be a good person but wasn't exactly father of the year. In a weird way he loved my dad who also has BPES but also was ashamed of him and of himself. I know it sounds awful. My dad had a fantastic mother who loved him so much, made up for anything that his father didn't give him. I am so glad that you are taking care of Kenley, that something like that won't happen to her. I am very emotional now with worries of my daughter plus being a new mom, but I often think of my grandfather and how different his life would have been if his mother had lived, or if the kind family had found him sooner. I wish I could recommend a doctor in your area, but I know someone will come through. Beth kenleyejp <kenleyejp@...> wrote: Thank you for all your response. However, now I have even more concerns. I have always liked Kenleys eye dr however he has never mentioned this syndrome in all the times he has seen kenley. It was not until going to the genetics clinic that we were told of this. Of course Kenley has teh eye problems as well as lung probs, thin brittle hair, small teeth. The list goes on. My question now is how do we go about finding a dr that knows what they are doing in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 You've got them, for Kenley and the rest of your family. Hope this will work out well! Dawn From: Lancaster <kenleyejp@...> Reply-blepharophimosis Date: Wed, 6 Apr 2005 20:28:18 -0700 (PDT) blepharophimosis Subject: Re: blepharophimosis NO TEARS Kenley had very dry eyes as well and they say that is what made the infections show up so often. Please keep kenley in your prayers. Her dr sent all of her info to a dr in st louis today to see if he will either see her or call him to help us out obriengroup@... wrote: Gwyneth never had infections, but dry dry eyes. Thanks, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Thank you. Please know my prayers go out to everyone here. I am not logged on much but think of all of you often. Dawn Harry <dharry11@...> wrote: You've got them, for Kenley and the rest of your family. Hope this will work out well!Dawn From: Lancaster <kenleyejp@...>Reply-blepharophimosis Date: Wed, 6 Apr 2005 20:28:18 -0700 (PDT)blepharophimosis Subject: Re: blepharophimosis NO TEARS Kenley had very dry eyes as well and they say that is what made the infections show up so often. Please keep kenley in your prayers. Her dr sent all of her info to a dr in st louis today to see if he will either see her or call him to help us out obriengroup@... wrote: Gwyneth never had infections, but dry dry eyes. Thanks, Pam Quote Link to comment Share on other sites More sharing options...
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