Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Hi Sheryl Lovely to hear all about you and Hayden. My name is Lucy and my husband Garry and I have a daughter called Holly who is 2 next month. Holly is our first child and she was born with BPES, the first in the family. When I read your e-mail about when Hayden was first born it sounded identical to our experience. For the first two weeks Holly would not open her eyes and everybody was concerned. Our GP doctor had no idea and said everything was fine, 'just the way she is'. Great! We finally got seen by another GP who referred us to our local hospital who then diagnosed BPES from a book. It was a relief to be told 'what' was wrong but a shock all the same. Only because we did not understand anything about the syndrome but now we know everything!!! From this support group we then found out that Mr Collin at Moorfields Eye Hospital in London is the top surgeon in the UK for this syndrome so we were then referred to him. Holly had her first eye sling surgery in September which was amazing. What a difference!! The reason why Holly was operated on so quickly, after seeing Mr Collin, was because her pupils were covered which is thought to hinder development of the eyes. If her pupils were not covered then she could have waited until aged 4 before surgery. All cases of BPES are so different. She is due to have the epicanthus inversus part of the syndrome operated on next year aged 3 ish. There are photos of Holly on the website but only before her op. We MUST put some recent ones on because the difference is amazing. Her head posture is the most noticable now she is not tilting her head back. Where abouts do you live? We live in Hampshire, UK. Feel free to ask more questions if you like. Take care Lucy Sheryl Kampen <sherylkampen@...> wrote: Hello, my name is Sheryl. My wonderful 18 month old son, Hayden has BPES.When he was born it didn't take more than a day for us to wonder if his little eyes were "normal" or if we should be concerned. He was so cute and so healthy but he seemed to keep his eyes closed a lot the first few days, (compared to our daughter), so we mentioning it to our midwife. She didn't have any answers and didn't want to worry us so she sent a note for our family doctor to look into it.This began our journey - the comments started coming from friends, relatives and even strangers and after a few months, a bit of shock, a lot of fear and many appointments with doctors, specialists, and a geneticist we found out that our son had BPES. Surprisingly it was a relief to find out it was a physical condition as opposed to a mental one, (the word Syndrome sounded so daunting and seemed to have such big implications)!After being referred to an Optomologist we were informed that Hayden will need sling surgery at 3.5 years to lift his lids. The sling will be harvested from his leg so the wait is to let his leg grow long enough to produce the necessary length.Since joining this group I have been reading your emails to each other and just am wondering why some of your children have surgery earlier? I find it hard to have faith in our doctors decision to wait. I don't want Hayden's eyes to stop functioning normally. Right now he is functioning at a normal 18 month level and seemingly hasn't been hindered by his little eyes. Though the doctor has done many such surgeries and I do trust his professional opinion I just need to know that he will do the best for my son - this is his face and potentially his eyesight! I would love to hear why the earlier surgeries are happening!Thanks for all the encouragement I have received in your emails. It is great NOT to be alone on this BPES road. I know that my questions have already been asked and answered and what I have been through has probably also happened to you.God sent me "my little sunshine," his wonderful attitude and constant smile. He's just the sweetest little guy. I find I spend so much time worrying that he won't be accepted but he wins hearts all by himself!__________________________________________________________Your opinion matters. Please tell us what you think and be entered into a draw for a grand prize of $500 or one of 20 $50 cash prizes. http://www.youthographyinsiders.com/R.aspx?a=116 All New – Tired of unwanted email come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Thank you for your response Lucy and your story about your experience with Holly. Just knowing that there are others who have shared my heartache and concern is comforting. We are all in this together I guess. Hayden's doctor is continuing to monotor him till the surgery. We have a check-up every six months to make sure that his pupils are not covered to a point where it will hinder his ability to filter light properly. I feel better already hearing that this is the right course to be taking; waiting unless necessary. We live in Burlington, Ontario (Canada). Right now we are with Dr. Harvey at McMaster University Hospital in Hamilton but I just wonder if anyone (closer to home) may know him or have had their surgeries done by him. We aren't sure how to look for the credentials of a surgeon but we want to know that our sons eyes are in good hands. Thanks again Lucy, I can't wait to see the updated pictures of your little darling. It is so good to hear surgery success stories! Sheryl Burlington, Ontario Canada >From: Lucy Chidgey <lcgosport@...> >Reply-blepharophimosis >blepharophimosis >Subject: Re: blepharophimosis Waiting with surgery? >Date: Sat, 13 Jan 2007 14:10:22 +0000 (GMT) > >Hi Sheryl > > Lovely to hear all about you and Hayden. My name is Lucy and my husband >Garry and I have a daughter called Holly who is 2 next month. Holly is our >first child and she was born with BPES, the first in the family. When I >read your e-mail about when Hayden was first born it sounded identical to >our experience. For the first two weeks Holly would not open her eyes and >everybody was concerned. Our GP doctor had no idea and said everything was >fine, 'just the way she is'. Great! We finally got seen by another GP who >referred us to our local hospital who then diagnosed BPES from a book. It >was a relief to be told 'what' was wrong but a shock all the same. Only >because we did not understand anything about the syndrome but now we know >everything!!! > > From this support group we then found out that Mr Collin at Moorfields >Eye Hospital in London is the top surgeon in the UK for this syndrome so we >were then referred to him. Holly had her first eye sling surgery in >September which was amazing. What a difference!! The reason why Holly was >operated on so quickly, after seeing Mr Collin, was because her pupils were >covered which is thought to hinder development of the eyes. If her pupils >were not covered then she could have waited until aged 4 before surgery. >All cases of BPES are so different. She is due to have the epicanthus >inversus part of the syndrome operated on next year aged 3 ish. > > There are photos of Holly on the website but only before her op. We >MUST put some recent ones on because the difference is amazing. Her head >posture is the most noticable now she is not tilting her head back. > > Where abouts do you live? We live in Hampshire, UK. > > Feel free to ask more questions if you like. > > Take care > > Lucy > > > >Sheryl Kampen <sherylkampen@...> wrote: > Hello, my name is Sheryl. My wonderful 18 month old son, Hayden >has BPES. > >When he was born it didn't take more than a day for us to wonder if his >little eyes were " normal " or if we should be concerned. He was so cute and >so healthy but he seemed to keep his eyes closed a lot the first few days, >(compared to our daughter), so we mentioning it to our midwife. She didn't >have any answers and didn't want to worry us so she sent a note for our >family doctor to look into it. > >This began our journey - the comments started coming from friends, >relatives >and even strangers and after a few months, a bit of shock, a lot of fear >and >many appointments with doctors, specialists, and a geneticist we found out >that our son had BPES. Surprisingly it was a relief to find out it was a >physical condition as opposed to a mental one, (the word Syndrome sounded >so >daunting and seemed to have such big implications)! > >After being referred to an Optomologist we were informed that Hayden will >need sling surgery at 3.5 years to lift his lids. The sling will be >harvested from his leg so the wait is to let his leg grow long enough to >produce the necessary length. > >Since joining this group I have been reading your emails to each other and >just am wondering why some of your children have surgery earlier? I find it >hard to have faith in our doctors decision to wait. I don't want Hayden's >eyes to stop functioning normally. Right now he is functioning at a normal >18 month level and seemingly hasn't been hindered by his little eyes. >Though >the doctor has done many such surgeries and I do trust his professional >opinion I just need to know that he will do the best for my son - this is >his face and potentially his eyesight! I would love to hear why the earlier >surgeries are happening! > >Thanks for all the encouragement I have received in your emails. It is >great >NOT to be alone on this BPES road. I know that my questions have already >been asked and answered and what I have been through has probably also >happened to you. > >God sent me " my little sunshine, " his wonderful attitude and constant >smile. >He's just the sweetest little guy. I find I spend so much time worrying >that >he won't be accepted but he wins hearts all by himself! > >__________________________________________________________ >Your opinion matters. Please tell us what you think and be entered into a >draw for a grand prize of $500 or one of 20 $50 cash prizes. >http://www.youthographyinsiders.com/R.aspx?a=116 > > > > > > >--------------------------------- > All New – Tired of unwanted email come-ons? Let our SpamGuard >protect you. _________________________________________________________________ Buy what you want when you want it on Sympatico / MSN Shopping http://shopping.sympatico.msn.ca/content/shp/?ctId=2,ptnrid=176,ptnrdata=081805 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Hi there sheryl, my name is Tonikka and My son is Lynden, he was only 5 weeks old when he had his first surgery, to answer your question on why "earlier rather than later" for us it was because lyndens lids were really droopy that they obstructed his vision, if we kept them like that it woud have been detrimental to his vision.... hence the early surgery. every child is differnet and every doctor is different in their surgery technique, my son had silicone rods inserted for his brow lift while others like your child will use ligaments from their body. i too was the same way thankful that it was mainly a cosmetic physical condition rather than a mental one. especially having my other 2 kids if they had Bleph it was easy for me to deal with... however lynden is our first and only with Bleph. Where are you located? what city? country? hope that answered at least part of your question on early surgery Tonikka Edmonton, Alberta CANADA Tonikka and Chris http://nottynurse.blogspot.com/ -----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of Sheryl KampenSent: January 12, 2007 8:16 PMblepharophimosis Subject: blepharophimosis Waiting with surgery? Hello, my name is Sheryl. My wonderful 18 month old son, Hayden has BPES.When he was born it didn't take more than a day for us to wonder if his little eyes were "normal" or if we should be concerned. He was so cute and so healthy but he seemed to keep his eyes closed a lot the first few days, (compared to our daughter), so we mentioning it to our midwife. She didn't have any answers and didn't want to worry us so she sent a note for our family doctor to look into it.This began our journey - the comments started coming from friends, relatives and even strangers and after a few months, a bit of shock, a lot of fear and many appointments with doctors, specialists, and a geneticist we found out that our son had BPES. Surprisingly it was a relief to find out it was a physical condition as opposed to a mental one, (the word Syndrome sounded so daunting and seemed to have such big implications)!After being referred to an Optomologist we were informed that Hayden will need sling surgery at 3.5 years to lift his lids. The sling will be harvested from his leg so the wait is to let his leg grow long enough to produce the necessary length.Since joining this group I have been reading your emails to each other and just am wondering why some of your children have surgery earlier? I find it hard to have faith in our doctors decision to wait. I don't want Hayden's eyes to stop functioning normally. Right now he is functioning at a normal 18 month level and seemingly hasn't been hindered by his little eyes. Though the doctor has done many such surgeries and I do trust his professional opinion I just need to know that he will do the best for my son - this is his face and potentially his eyesight! I would love to hear why the earlier surgeries are happening!Thanks for all the encouragement I have received in your emails. It is great NOT to be alone on this BPES road. I know that my questions have already been asked and answered and what I have been through has probably also happened to you.God sent me "my little sunshine," his wonderful attitude and constant smile. He's just the sweetest little guy. I find I spend so much time worrying that he won't be accepted but he wins hearts all by himself!__________________________________________________________Your opinion matters. Please tell us what you think and be entered into a draw for a grand prize of $500 or one of 20 $50 cash prizes. http://www.youthographyinsiders.com/R.aspx?a=116 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2007 Report Share Posted January 13, 2007 Hi Sheryl its Clare and Emy Teale from Hertfordshire, UK here. I have BPES, and so does my daughter Emy (11) she had surgery at age 4.5yrs, under Dr Collin, Moorfields, just like you, he kept a check on Emy every 6 months until surgery. Her eye sight was just fine, and as long as they were happy with the way her eyesight was developing Mr Collin said he didnt need to do the operations any earlier - all children and adults with BPES are different and have different needs when it comes to surgery, i think to be assessed and take advice from a surgeon, Doctor or Consultant we trust is good. I think you are absolutely right, these little bundles are the most precious things, and we need to make the right decisions - a little difficult when we dont even know there is a name for BPES. I think what you are doing is fantastic, it sounds like you are taking advice and researching as much as possible from all different sources, and then its down to who we trust. If someone recommends a surgeon then even better. Well done you. It sounds like he has the best start in life - he has you. Feel free to mail back - would love to chat. Regards Clare Teale - Herts UKSheryl Kampen <sherylkampen@...> wrote: Hello, my name is Sheryl. My wonderful 18 month old son, Hayden has BPES.When he was born it didn't take more than a day for us to wonder if his little eyes were "normal" or if we should be concerned. He was so cute and so healthy but he seemed to keep his eyes closed a lot the first few days, (compared to our daughter), so we mentioning it to our midwife. She didn't have any answers and didn't want to worry us so she sent a note for our family doctor to look into it.This began our journey - the comments started coming from friends, relatives and even strangers and after a few months, a bit of shock, a lot of fear and many appointments with doctors, specialists, and a geneticist we found out that our son had BPES. Surprisingly it was a relief to find out it was a physical condition as opposed to a mental one, (the word Syndrome sounded so daunting and seemed to have such big implications)!After being referred to an Optomologist we were informed that Hayden will need sling surgery at 3.5 years to lift his lids. The sling will be harvested from his leg so the wait is to let his leg grow long enough to produce the necessary length.Since joining this group I have been reading your emails to each other and just am wondering why some of your children have surgery earlier? I find it hard to have faith in our doctors decision to wait. I don't want Hayden's eyes to stop functioning normally. Right now he is functioning at a normal 18 month level and seemingly hasn't been hindered by his little eyes. Though the doctor has done many such surgeries and I do trust his professional opinion I just need to know that he will do the best for my son - this is his face and potentially his eyesight! I would love to hear why the earlier surgeries are happening!Thanks for all the encouragement I have received in your emails. It is great NOT to be alone on this BPES road. I know that my questions have already been asked and answered and what I have been through has probably also happened to you.God sent me "my little sunshine," his wonderful attitude and constant smile. He's just the sweetest little guy. I find I spend so much time worrying that he won't be accepted but he wins hearts all by himself!__________________________________________________________Your opinion matters. Please tell us what you think and be entered into a draw for a grand prize of $500 or one of 20 $50 cash prizes. http://www.youthographyinsiders.com/R.aspx?a=116 We won't tell. Get more on shows you hate to love(and love to hate): TV's Guilty Pleasures list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 Hi Sheryl. I was in a similar situation when my daughter Rylee was born. We had no idea what was wrong with her only that her eyes were not opening and I just knew something was wrong. I agonized over what I may have done during my pregnancy, was it the drink I had at dinner the night we conceived? was it something I eat, didn't eat didn't do etc. My husband was sure that baby was fine and told me not to worry. After three visits to the pediatrician and they had no answers either. I happen to be walking out of Kaiser when Rylee was two weeks old and the head genetisits there said do you know your child has a birth defect? I was devestated, but worked and pushed hard to get more information and you should do the same. Rylee essentially has no eye lids or eye lid muscles, so she must use her forehead muscles to open her eyes and this causes strain on her neck as she must tilt her head back to do so. I worked with Childrens Hospital here in San Diego and was able to push for a lid surgery (a pully system using the forehead muscles) when she was six months. What a great difference that made. Additionally, she wears glasses daily. We are now heading for the eye flap surgery (which hopefully will be scheduled this month). This will further open her eye area and help refine the BPES flap features. This is not a necessary surgery for her vision but I think will help her facially and open her eyes more. She seemed to heal so well after the other, I wanted to try it now before she entered school. I hope this helps and you encourage you to be your own cheerleader. The condition seems so rare that many doctors are not familiar with it and at times you must work as a team with them to get the results. I think it ok to push for the best for your child, you know them and want the best for them. Take care Aimee in San Diego Sheryl Kampen <sherylkampen@...> wrote: Hello, my name is Sheryl. My wonderful 18 month old son, Hayden has BPES.When he was born it didn't take more than a day for us to wonder if his little eyes were "normal" or if we should be concerned. He was so cute and so healthy but he seemed to keep his eyes closed a lot the first few days, (compared to our daughter), so we mentioning it to our midwife. She didn't have any answers and didn't want to worry us so she sent a note for our family doctor to look into it.This began our journey - the comments started coming from friends, relatives and even strangers and after a few months, a bit of shock, a lot of fear and many appointments with doctors, specialists, and a geneticist we found out that our son had BPES. Surprisingly it was a relief to find out it was a physical condition as opposed to a mental one, (the word Syndrome sounded so daunting and seemed to have such big implications)!After being referred to an Optomologist we were informed that Hayden will need sling surgery at 3.5 years to lift his lids. The sling will be harvested from his leg so the wait is to let his leg grow long enough to produce the necessary length.Since joining this group I have been reading your emails to each other and just am wondering why some of your children have surgery earlier? I find it hard to have faith in our doctors decision to wait. I don't want Hayden's eyes to stop functioning normally. Right now he is functioning at a normal 18 month level and seemingly hasn't been hindered by his little eyes. Though the doctor has done many such surgeries and I do trust his professional opinion I just need to know that he will do the best for my son - this is his face and potentially his eyesight! I would love to hear why the earlier surgeries are happening!Thanks for all the encouragement I have received in your emails. It is great NOT to be alone on this BPES road. I know that my questions have already been asked and answered and what I have been through has probably also happened to you.God sent me "my little sunshine," his wonderful attitude and constant smile. He's just the sweetest little guy. I find I spend so much time worrying that he won't be accepted but he wins hearts all by himself!__________________________________________________________Your opinion matters. Please tell us what you think and be entered into a draw for a grand prize of $500 or one of 20 $50 cash prizes. http://www.youthographyinsiders.com/R.aspx?a=116 Never Miss an EmailStay connected with on your mobile. Get started! Quote Link to comment Share on other sites More sharing options...
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