Re: Waiting with surgery? - I'm in Oakville, Ontario

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Hi Sheryl, My name is and both my son and I have BPES. I am 42 and my son is 17 and we are also both patients of Dr. Pashby. Our pictures are in the & Tyler folder. I am also here if you would like to ask any questions about Dr. Pashby or anything else. Take care, Grawbarger Restoule, Ontario"E. Lee" <evergreen_lee@...> wrote: Hi Sheryl,My oldest son, now 8 1/2 years old has BPES. His pictures are posted under Keaton Wong but I still haven't put up baby pictures. Please call me and we can make arrangements to meet if you like.Surgery times, as a lot of people have mentioned, depends on how much their vision development is being impacted.You may want a 2nd opinion from Dr. Pashby who is associated

with Sick Kids and has an office off of the DVP.My contact information is below.Evergreen Lee397 Freeman Crescent,Oakville, ON L6H 4R4Phone: 905 338-8762Fax: 905 618-0079Cell: 416 526-7581>From: "Sheryl Kampen" >Reply-blepharophimosis >blepharophimosis >Subject: Re: blepharophimosis Waiting with surgery?>Date: Sat, 13 Jan 2007 09:49:38 -0500>>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 > >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 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>>>>

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Hi all, It's been awhile since I've posted a message, but I follow them regularly. I was excited to see Dr. Pashby's name mentioned, as I will be meeting with him in 2 months to discuss the surgery options and when they may be performed for my son. Braydon is 7 months old now and was diagnosed at 2 months, but like so many others with BPES, nobody knew what was going on until then...I kept hearing that some babies just take longer to open their eyes!

I would love to hear from anyone who has had surgery performed by Dr. Pashby. Good and bad experiences are welcome. Also then I may be able to look at some before and after photos so that I may have an idea of what Braydon's outcome might be like.

Does anyone have any suggestions for questions that I may want to ask when meeting with a surgeon? Thanks in advance for all your help, and for the support over the past few months!Jen MacKinnon

ton, NBOn 1/13/07, Kati Graw <katigraw@...> wrote:

Hi Sheryl, My name is and both my son and I have BPES. I am 42 and my son is 17 and we are also both patients of Dr. Pashby. Our pictures are in the & Tyler folder.

I am also here if you would like to ask any questions about Dr. Pashby or anything else. Take care, Grawbarger Restoule, Ontario " E. Lee " <evergreen_lee@

hotmail.com> wrote:

Hi Sheryl,My oldest son, now 8 1/2 years old has BPES. His pictures are posted under Keaton Wong but I still haven't put up baby pictures. Please call me and we can make arrangements to meet if you like.

Surgery times, as a lot of people have mentioned, depends on how much their vision development is being impacted.You may want a 2nd opinion from Dr. Pashby who is associated

with Sick Kids and has an office off of the DVP.My contact information is below.Evergreen Lee397 Freeman Crescent,Oakville, ON L6H 4R4Phone: 905 338-8762Fax: 905 618-0079Cell: 416 526-7581

>From: " Sheryl Kampen " >Reply-blepharophimosis

>blepharophimosis >Subject: Re: blepharophimosis Waiting with surgery?>Date: Sat, 13 Jan 2007 09:49:38 -0500>>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 > >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 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.youthogr

aphyinsiders.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>>>>