Suggestions for upcoming surgery


#1

Hello,
I am a foster parent to an almost 3 year old with BPES. We have had genetic testing, developmental testing, neurological testing, and she has had already one surgery with us to refine the springs holding her eyelids open. She is upcoming on another surgery next month, to open the eyelids at the bridge of her nose, which is very wide and thick. This is our first experience with BPES.

What are some of the personality characteristics in this type of child? Are there any developmental dissabilities that others have found in their children?

She was awfully upset after her surgery last year. She had 2 prior surgeries before going into care. The surgeon says she cannot rub her eyes after this next surgery. Does anyone have suggestions regarding this. Both eyes will be done.

Thanks for your help.
Cyndi


#2

Hi Cyndi

My daughter Holly aged 2 and a half is the first in our family to have BPES.
It took us a while to get our heads around and to learn all about it but in
simple terms this is how I explain to other people. Holly was born with no
muscle in her eyelids, has small eye openings and excess skin on the inside
part of her eyes. Two thins can be corrected with surgery. It is all just
on how the eyes look, nothing more. I understand that other parents who
have children with BPES have experienced other issues/disabilities but I
believe they are not connected. People with BPES go on to lead normal and
successful lives and have no learning or other physical difficulties.

Holly was also distraught after her last operation but I think a lot of it
is because they are so young and also the anaesthetic makes a lot of
difference. Once they have slept it off they are generally fine.

If you have any more questions please e-mail me on; lucy.chidgey@virgin.net.

We live in Hampshire, UK. Where do you live?

Kind regards

Lucy xx


#3

cyndieik wrote:

Hello, I am a foster parent to an almost 3 year old with BPES. We
have had genetic testing, developmental testing, neurological
testing, and she has had already one surgery with us to refine the
springs holding her eyelids open.

Springs!? I hope you meant ‘slings’.

She is upcoming on another surgery
next month, to open the eyelids at the bridge of her nose, which is
very wide and thick. This is our first experience with BPES.

What are some of the personality characteristics in this type of
child? Are there any developmental dissabilities that others have
found in their children?

No personality or developmental characteristics are part of BPES. Some
studies have found a higher than average IQ, but remember that BPES is
quite rare, so sample populations are small and therefore results have
limited reliability. Note that my own study (population: approximately

  1. confirms this finding, although, as the years go by, I’m getting less
    sure…

She was awfully upset after her surgery last year. She had 2 prior
surgeries before going into care.

Discomfort and upset on waking from anaesthetics seems common, from what
I gather. Let not your heart be troubled.

The surgeon says she cannot rub
her eyes after this next surgery. Does anyone have suggestions
regarding this. Both eyes will be done.

When I had the canthoplasty surgery (about [mumble] decades ago), my
mother taped something to the insides of my elbows so I couldn’t bend my
arms enough to touch my eyes. Can’t remember, m’self, but I assume it
worked.

Rob W
Oz


#4

My daughter had the surgery several times and didn’t bother her eyes which totally amazed me her first surgery was at 7 months and the last at around age 4.? Also if it makes you feel any better she graduated Valedictorian of her class was the captain of the cheerleading squad and is currently a sophomore at LSU and doing fine.

Best of luck.