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

[Guest guest]

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 Lee

397 Freeman Crescent,

Oakville, ON L6H 4R4

Phone: 905 338-8762

Fax: 905 618-0079

Cell: 416 526-7581

>From: " Sheryl Kampen " <sherylkampen@...>

>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 <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!

> >

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> >

> >

> >

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