Re: Side-effects from BPES?

[Guest guest]

Hej Lise,

I just had a look at Sylvesters photo. He is such a cutie and sooo happy!!

I am not an expert or have loads of experience with BPES but from my short 3.5

years with

Naomi, I am happy to share what I understand.

Naomi has BPES and is the only one in our family that has it. When she was

diagnosed at 3

months old, our doctors here in Singapore advised us to use surgical tapes to

keep her

eyes open. This was to help delay surgery and/ or reduce the number of

operations.

So far so good, she is happy with her tapes and recently we've changed it to a

translucent

one. We watch out for vision problems like lazy eye, cross eye and also get her

vision

tested every 6 months. She does not have any vision problems excpet for long

sightedness

which the UK and Singapore doctors say is due to her smaller eyeballs (note: not

eye

opening).

When she gets a stuffy nose, she gets green muck in her eye which seems to be

well

managed with some gentle massage in the area between the eye and nose.

Being female, there MAY be an issue with infertility but that's unclear. As far

as I

understand, it should not affect males.

Other than that, she's a happy and bright kid.

Anyway, try not to worry too much. Not everything other people experience will

mean that

it'll happen to Sylvester. BPES is not as well researched as more common medical

conditions so a lot of the times there may be no clear answers.

You are doing a great job by giving Sylvester so much love, hugs and kisses. One

of my

goals is also to help Naomi grow up with a healthy self esteem and good

confidence.

Bearing in mind that it is normal to lack confidence sometimes : )

There are many very inspiring and encouraging people in this group. One clear

message I

get from them is that I should not let BPES be a stumbing block. One lady always

say to me

" BPES is nothing " . How I view and react to this will rub off on Naomi so after

much trial and

error we seem to have found a comfortable spot now. The days I don't think about

BPES

out number the days I do.

Hope that was in some small way helpful to you Lise. Take care of yourself and

give

Sylvester a big hug and kiss from me.

Venlig hilsen

--- In blepharophimosis , " sylvester2603 " <sbjoglise.jensen@...>

wrote:

>

> My boy is only 3 month old and a big healthy boy. I wonder if any of

> you know if there is any side-effect when having this BPES-syndrome?

> Besides the not so perfect eyes? Does all have trouble by seeing and

> have glasses? I have so many questions, but I start with this for now.

> thanks all of you.

>

> Lise (Sylvester)

>

[Guest guest]

Hi Lise,

unfortunately yes, vision problems are more common in patients with

BPES than without.

Here is a statitistic.

http://www.ihop-net.org/UniPub/iHOP/pm/10066973.html?pmid=14710475

The most important thing to do now is to be sure the child has vision

and is not developing amblyopia from inability to fully expose the

pupil. Time is short as amblyopia is usually fixed and irrevesable by

one year. Regular vision check every 3-6 month by a competent pediatric

ophthalmologist is very important!!!

Regards, Anja

>

> My boy is only 3 month old and a big healthy boy. I wonder if any of

> you know if there is any side-effect when having this BPES-syndrome?

> Besides the not so perfect eyes? Does all have trouble by seeing and

> have glasses? I have so many questions, but I start with this for now.

> thanks all of you.

>

> Lise (Sylvester)

>

[Guest guest]

>

> My boy is only 3 month old and a big healthy boy. I wonder if any of

> you know if there is any side-effect when having this BPES-syndrome?

> Besides the not so perfect eyes? Does all have trouble by seeing and

> have glasses? I have so many questions, but I start with this for

now.

> thanks all of you.

>

> Lise (Sylvester)

>

Hi Lise,

my name is Ally Im 38 and 2 out of my 4 children have bleph.I

have perfect eye sight as do my 2 boys with bleph one is 16 and one is

8.My daughter who is 18 and does not have bleph is the only one in our

family who wears glasses.When I was 15 and the eldest of 5 sibblings

we all had our eyes tested and I was told that I had better vision

than my sibblings.I hope this helps.

All the best Ally.