New member

[Guest guest]

Hi, My name is Kerri. My daughter Kylah is three months old. She has just been diagnosed with BPES. We went to the Jervey Eye Group in Greenville South Carolina, where she was diagnosed. However, being that I moved here from Boston last year, I have actually set up an appointment with a specialist out of Boston. The Jervey Eye Group has a pediatric opthamology specialist on staff. They may be able to assist you. Kerri Greenville SC <teresa.wethington@...> wrote: My husband and I are in the process of adopting a little girl from Russia. She has blepharophimosis and partial bilateral ptosis. We are looking for whatever information we can find out about it. Does anyone here know of a specialist near Columbia SC? Thanks so much! Columbia, SC

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[Guest guest]

> > > >

> > > > Hi,

> > > >

> > > > My name is Donna and I have a 15 month old boy, who has

> > > BPES.

> > > > is a beautiful, happy baby who we love very much and he

> > seems

> > > to

> > > > have a knack for making everyone who meets him fall in love

> with

> > > him.

> > > > He has a 4 year old sister and they adore each other.

> > > >

> > > > He is the first in the family with BPES, so until he was born

> we

> > > had

> > > > never heard of it. It is nice to read messages and hopefully

> > learn

> > > > from everyones experiences.

> > > >

> > > > has only recently started crawling and standing and we

> have

> > > been

> > > > told by the drs. that this is normal for someone with BPES as

> > > mobility

> > > > can be late to develop - did anyone else experience this?

> > Although

> > > > now he is coming on leaps and bounds.

> > > >

> > > > It has taken time for me to pluck up the courage to join the

> > group

> > > but

> > > > I guess that I need to know more about the surgery he will

> face

> > > when

> > > > he is older.

> > > >

> > > > We live in the UK and would be interested to hear from others

> in

> > > the UK

> > > > so we can share information on doctors etc.

> > > >

> > > > Best Wishes to you all

> > > >

> > >

> >

>Hi Donna,

My name is Leonie, I'm 35, from the UK but living in Crete, Greece.

My son was born on 15th Aug 2006 so he is now 15 months. He has BPES.

He also has a seperate issue of Hydrocephalus; now has a shunt.

I was interested in your posts about walking. Dominic was late to

crawl etc. and we were never sure if it was to do with the hydro or

the BPES.

Now he will walk for miles holding onto his walker (not the sit in

type) but he will not try walking alone, even though he can and does

stand alone well.

I hope that he will soon take the final step (doh!) towards walking.

Last friday he was also fitted with glasses; the doctors here think

it helps to avoid amblyopia (lazy eye) from developing.

We have an appt. with the cosmetic eye surgeon on the 5th Dec. so it

will be interesting to hear what he has to say.

Nice to hear from a mum in similar circumstances; and also Beth who

also has a 15 month old!

Best wishes

Cretemum

[Guest guest]

Hi Keri and ,

I live in Charlotte, NC and my daughter, Paige, is checked regularly by Dr. Saunders at Charlotte Eye, Ear, Nose, and Throat to make sure she has no immediate changes in her vision. He is very familiar with BPES, however, my daughter will be having corrective surgery soon and the surgery will be performed by Dr. Dutton at UNC School of Medicine in Chapel Hill. He was referred to us by a friend of mine who is actually a peditrician and is more alligned with my thoughts as far as the surgery is concerned as I also have BPES and had corrective surgery.

I just thought I would mention it just in case you wanted to see someone in NC.

Re: blepharophimosis New Member

Hi, My name is Kerri. My daughter Kylah is three months old. She has just been diagnosed with BPES. We went to the Jervey Eye Group in Greenville South Carolina, where she was diagnosed. However, being that I moved here from Boston last year, I have actually set up an appointment with a specialist out of Boston. The Jervey Eye Group has a pediatric opthamology specialist on staff. They may be able to assist you.

Kerri

Greenville SC <teresa.wethington@ gmail.com> wrote:

My husband and I are in the process of adopting a little girl from Russia. She has blepharophimosis and partial bilateral ptosis. We are looking for whatever information we can find out about it. Does anyone here know of a specialist near Columbia SC? Thanks so much! Columbia, SC

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[Guest guest]

Thanks !!! I really appreciate that. My son's ENT

recommended a doctor here in Columbia that we're going to try to

talk to once we get Olga's medical records from Russia (may be

several months before we get those). But we may want a second

opinion as well. Thanks again!

http://www.itsfamily.net

> My husband and I are in the process of adopting a little girl from

> Russia. She has blepharophimosis and partial bilateral ptosis. We

> are looking for whatever information we can find out about it.

Does

> anyone here know of a specialist near Columbia SC? Thanks so much!

>

>

> Columbia, SC

>

>

>

>

>

>

> Get easy, one-click access to your favorites. Make your

homepage.

>

>

>

>

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> with Mobile. Try it now.

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>

[Guest guest]

Thank you ! We're still waiting on medical records, and

we'll be talking to our pediatrician and ENT here in Columbia for

recommendations. We'll probably get several opinions though, so we

appreciate the suggestions. Happy holidays!

http://www.itsfamily.net

> My husband and I are in the process of adopting a little girl from

> Russia. She has blepharophimosis and partial bilateral ptosis. We

> are looking for whatever information we can find out about it. Does

> anyone here know of a specialist near Columbia SC? Thanks so much!

>

>

> Columbia, SC

>

>

>

>

>

>

> Get easy, one-click access to your favorites. Make your

homepage.

>

>

>

>

______________________________________________________________________

______________

> Be a better sports nut! Let your teams follow you

> with Mobile. Try it now.

http://mobile./sports;_ylt=At9_qDKvtAbMuh1G1SQtBI7ntAcJ

>

[Guest guest]

Hi Mara,

I just joined this Health group today and posted a message

which linked me to the one you sent a few years ago! We seem to be

roughly the same age and also seem to be facing or have faced

difficulties with fertility...I'm not even sure if you are still a

member but if you are, I'd love to hear from you so we can swap

stories...I think you may have a great deal more information than I

do on fertility etc because I have only recently discovered problems

with conceiving...

Anyway, at this stage, I'll keep it to that!

Look forward to hearing from you,

Georgie

--- In blepharophimosis , " marabogs " <marabogs@...>

wrote:

>

> Hi Everyone-

>

> My name is Mara and I am a new member. I am a 25 year old female

> with BPES and was also recently diagnosed with Pre Mature Ovarian

> Failure (POF) which i am learning is linked to BPES.

>

> Throughout my life, I have had 3 eye surgeries; ages, 1, 2 and

10.

> Obviously, I don't remember the surgeries at 1 and 2 but I have a

> very clear memory of my surgery at age 10. The last surgery was

the

> one that was most successful. It changed the look of my eyes

> drastically.

>

> That was 15 years ago, so I can't even imagine the technology

that

> there is now! As I have gotten older and my face has matured, my

> eyes definitely look bigger than they ever did. The doctor had

told

> my parents that would happen but who really knew if it would. I

can

> honestly say that I look the best I have ever looked.

>

> I have been reading all the messages posted and wish that this

> resource was around when I was growing up. I would have loved to

be

> able to talk with others about what I was going through. I always

> had a ton of friends but it was the strangers that really got to

> me. " What's wrong with your eyes? " " Are you retarded or

> something " ?; i would get these comments and other like it quite

> often. It really hurt but luckily I had a very supportive family

and

> great friends who helped me through it definitely didn't stop me

from

> anything...I was involved in all types of sports (soccer,

softball,

> gymnastics, sking,etc) and always had a great attitude!

>

> So, that's a little history about me. I would love to chat with

> other e females who have pof or other problems conceiving as I am

> concerned that I will not be able to have kids. I also have a

> concern that there are other things linked to BPES that I am not

> aware of. Since I have grown up with BPES, i would also be happy

to

> answer any questions anyone has.

>

> I have also posted photos of me on the board. When I go to my

> parents house, I can get photos of my from when I was younger to

show

> the difference.

>

[Guest guest]

Hi Georgie

Welcome to group. The best single source of information is here:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

This article will explain how to find out.

Also – you may like to look at post no 5701.

Sorry for the brief reply – but I am going to be late for

work.

Regards

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of knightgeorgie

Sent: 14 January 2008 12:09

blepharophimosis

Subject: blepharophimosis New Member

Hi,

My name is georgie and I joined this group today - I'm 27 and have

blepherophimosis. Thus far, the condition hasn't really affected any

aspect of my life if I'm completely honest so joining a group like

this has never occurred to me...until now!

I've recently been seeing doctor's because my periods are irregular

and have just discovered the syndrome is linked to premature

menopause. Without wanting to go into too much detail (although, at

this stage I'm virtually clueless anyway!) I just found this group

whilst browsing the internet and thought I'd post a message! Are

there any other girls out there who are going through this at the

moment? Has anyone managed to conceive? Does anyone have any advice?

How do you find out if you are type 1 or 2?

A million thanks!

Georgie

[Guest guest]

Hi Georgie,

my name's I am 30 yrs old and have BPES and Premature Ovarian

Failure (POF). I have not looked at this site for a while or posted

either as I have been emailing someone I met on this site direct as

she also has POF and is 31 yrs old but for some reason tonight I

thought I would have a look onto the site. If you have any questons

I don't mind, I was shocked when I found out about POF and that it

is related to my eye condition it seems so strange that its

related. Anyway like you I did not let anything bother me over the

years but when I got married in 2005 and was searching for

information about passing BPES onto any children I found this site

and found out alot about POF. My GP referred me to a specialist and

my FSH levels (hormones) were tested and confirmed I had gone

through or was going through the menopause. I'll check the site

again but if you'd like to email direct my email is

sarahduncan7@...

You'll definately find this site useful, I certainly did back in

2005 and also met up with everyone in London in December 2005 which

was lovely. take care and hope to hear from you soon.

sarah

>

> Hi,

> My name is georgie and I joined this group today - I'm 27 and have

> blepherophimosis. Thus far, the condition hasn't really affected

any

> aspect of my life if I'm completely honest so joining a group like

> this has never occurred to me...until now!

>

> I've recently been seeing doctor's because my periods are

irregular

> and have just discovered the syndrome is linked to premature

> menopause. Without wanting to go into too much detail (although,

at

> this stage I'm virtually clueless anyway!) I just found this group

> whilst browsing the internet and thought I'd post a message! Are

> there any other girls out there who are going through this at the

> moment? Has anyone managed to conceive? Does anyone have any

advice?

> How do you find out if you are type 1 or 2?

>

> A million thanks!

> Georgie

>

[Guest guest]

Hello to you Mara!

I am a 37 year old woman from Norway having BPES, but I will now

certainly check up about the POF...In NOrway there are not many

people with this syndrome, so they havent really got that far when

it comes to research about this topic...Unfortunately...I have had 2

operations, when I was 6 (eyelid) and 27 (opening up towards the

nose). My father and a younger brother have BPES too.

When I was younger I was bullied alot because I looked different.

People always asked if I came from China (of all places...ha ha )and

I didnt have many friends and little support....But You grow older

and so does your confident and now I have accepted my self as I

am..As my older brother said; " look on the bright side sis, you only

look very exotic " ..So in that way I think I am special and so are

you all;.).

As I have been told after consulting wiht a specialist in medical

genetics, she said it is 50% chance of passing the syndrome to your

children and I think both mine have the gene but not the pfysically

look. I can see it on the eyebrows and the way they use their

forehad...LIke we do when opening the eyes...

When it comes to fertility I have had problems getting pregnant

becasue my periods are irregular. And problems having the children

and had both timens to operate them out in an emergency. Do you know

what type you have - 1 or 2? Hope to talk to you soon:-)

See you soon

From Trine

[Guest guest]

Thanks for telling me about it! I have been looking for a group

like this one, as I have diabetes and want natural ways of dealing

with it. The doctor's meds are either not working, or have so many

side effects I'm getting scared to take them!

When I was growing up, I learned a little bit about herbs from my

Cherokee relatives, but not enough!

Love, Sherrie

>

> I would like to welcome Sherrie to our group,Sherrie is a friend

of

> mine and I hope will get a lot out of this group as well as add to

it!!

> WELCOME SHERRIE,

> Marty Stompingelk

>

[Guest guest]

BooZhoo Sherrie,

go to the files of the group and type in diabetes..

if that does not work Joy knows how to find things but

She is very busy!!

Marty Stompingelk

--- Sherrie <mthawk2@...> wrote:

> Thanks for telling me about it! I have been looking

> for a group

> like this one, as I have diabetes and want natural

> ways of dealing

> with it. The doctor's meds are either not working,

> or have so many

> side effects I'm getting scared to take them!

>

> When I was growing up, I learned a little bit about

> herbs from my

> Cherokee relatives, but not enough!

>

> Love, Sherrie

>

>

>

> >

> > I would like to welcome Sherrie to our

> group,Sherrie is a friend

> of

> > mine and I hope will get a lot out of this group

> as well as add to

> it!!

> > WELCOME SHERRIE,

> > Marty Stompingelk

> >

>

>

>

Spiritual freedom is my birthright.

I am a free thinker. I am able to rise above mental

prejudices and stereotypes of others.

I am a free thinker. Nobody and nothing can manipulate

me or deceive me.

I am a free thinker. I freely choose truth and love.

Today, I embrace a greater degree of spiritual

freedom.

________________________________________________________________________________\

____

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know-it-all with Mobile. Try it now.

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[Guest guest]

Welcome Sherrie, Glad that you joined the group. I looked this up for you: herbal remedies for diabetes: http://www.holistic-online.com/REMEDIES/Diabetes/diabetes_herbs.htm I'm going to post the whole article, its a good one. Go to the files section if you hadnt already, click onto diabetes, and there are 2 articles one from Dr blaylock, the other one is for warning signs. Blessings, and Enjoy the group, MicheleSherrie <mthawk2@...> wrote: Thanks for telling me about it! I have been looking for a group like this one, as I have diabetes and want natural ways of dealing with it. The doctor's meds are either not working, or have so many side effects I'm getting scared to take them! When I was growing up, I learned a little bit about herbs from my Cherokee relatives, but not enough! Love, Sherrie>> I would like to welcome Sherrie to our group,Sherrie is a friend of > mine and I hope will get a lot out of this group as well as add to it!!> WELCOME SHERRIE,> Marty

Stompingelk>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Welcome Sherrie, hope you will feel right at home, AtieOn Fri, Apr 18, 2008 at 3:16 PM, Sherrie <mthawk2@...> wrote:

Thanks for telling me about it! I have been looking for a group

like this one, as I have diabetes and want natural ways of dealing

with it. The doctor's meds are either not working, or have so many

side effects I'm getting scared to take them!

When I was growing up, I learned a little bit about herbs from my

Cherokee relatives, but not enough!

Love, Sherrie

>

> I would like to welcome Sherrie to our group,Sherrie is a friend

of

> mine and I hope will get a lot out of this group as well as add to

it!!

> WELCOME SHERRIE,

> Marty Stompingelk

>

[Guest guest]

Hi ,

Well you have definately found the best place for support and

information. I have bleph and so does my 6 mth old daughter. My heart

goes out to those who experience it for the first time. I'm sure your

sister will be on an emotional rollercoaster ride at the moment. At

this early stage my only advice would be to reassure your sister that

there is definately plenty of support here and when she is ready maybe

she could have a look at this website herself. It is like meeting a

whole new family when you get to see everyone elses photos and know

that you are not alone. Let your sister know that bleph (with regards

to the eyes) is purely cosmetic, it has not held me back at all, I am

a Police Officer and I'm married to an awesome husband (who I think is

very handsome!). There is also the early menopause side of bleph that

is something your neice may or may not be effected with but this is

something she should discuss with her doctors.

And to you I say WELCOME, you to are now part of the bleph family!

I hope your sister joins the group when she is ready, if not I look

forward to hearing about your neice as she grows.

Take care

(Australia)

Oh yeah..... and congrats on becoming an aunty!

[Guest guest]

Hi - its Clare Teale - Herts UK

Congratulations to you and your sister!!

Welcome to you, your neice and sister are very very lucky to have such a wonderful person like you.

I have BPES and so does my daughter Emy (12), completely understand the emotional rollercoaster you are all going through.

BPES is cosmetic issue, certainly in our case. I am a successful personal development trainer, who has been married for 15 years with 3 children. I can honestly say it has not held me back in anyway, actually I am a true believer that what we experience in our lives makes us the people that we are, and I wouldnt change anything for the world.

This is a fantastic place for us all to share, ask and learn, for you, your sister and your neice as she grows.

My 3 children and confident and happy and my daughter is the sweetest, most caring, amzing young lady I have ever met - and she has a fantastic smile.

When your sister is ready, we will all be here. Ask away.................

Huge congratulations to all of you.

Clare Teale - Herts UK

From: mountaindalelady <mountaindalelady@...>Subject: blepharophimosis new memberblepharophimosis Date: Thursday, July 10, 2008, 9:53 PM

Hello - my name is and my niece (two weeks old now!) was diagnosed yesterday with Blepharophimosis. I have encouraged her mom to start right away in gathering support from other parents but she is just too overwhelmed today, so I decided to hop on and get started for myself! We are less than 24 hours into this so still on a huge learning curve, her first visit to a lid specialist is another week away. Any advice on the best way to support my sister as a new single mom through this process would be extremely helpful. I love them both so much! Thank you!

[Guest guest]

Hello ,

I think you have found a very good place for information and support.

Our son (37 now) has blepharophimoses and so has his daughter (4,5).

It was quite a problem in those days to find medics that could help us.

Finally we found a very good professor in plastic surgeon in Rotterdam. He

operated and chanced the eyelids and built him a nose bridge when he was 12

years. We were very happy but had no clou what caused his condition let

alone that we knew about blephariphiomosis.

When our grandaughter was born we noticed immediately that she had the

same condition. It was me, sitting for a couple of hours " in the internet "

that discovered blepharophimoses. Shortly after this I " discovered " this

group.

I'm sure your sister will experience the same emotions as we did 37 years

ago.I can only advice her to become member of this group and she soon wil

find out that there can be don something on the cosmetic condition.

was operated to lift her eye lids in order to assure a good development

of the eye functio. That worked out well. For plastcal operations later in

her life we shall have to find a good surgeon, mother is Chinese so the

asiatic part of her face has to be taken in consideration.

Our son did fine at school and in university and now he holds a good

position in one of the mayor banks in Europe. is doig very fine at

kindergarten, she has friends and joines the group as she should be which

means a fight and a hug from time to time ;-)))

I hope to hear from your sister, please bring her my sympathy and greetings.

Dolph Heideman

The Netherlands

[Guest guest]

Welcome ! It sounds like your sister is getting some great support and

help from you and this group is a great place for questions and support. It

seems very overwhelming in the beginning...our son is now 17 months

old and a very happy baby. We definitely still get the questions and comments

like " oh, he looks so sleepy. " He did have surgery at 10 months and 13 months so

that his vision could continue to develop. When your sister is ready, I'm sure

she will find some comfort in this group. Hopefully you already have. Best

wishes to you, your sister and your niece. --Anne Weber-- Chicago, IL, USA

> From: mountaindalelady <mountaindalelady@...>

> Subject: blepharophimosis new member

> blepharophimosis

> Date: Friday, July 11, 2008, 9:53 AM

> Hello - my name is and my niece (two weeks old

> now!) was

> diagnosed yesterday with Blepharophimosis. I have

> encouraged her mom

> to start right away in gathering support from other parents

> but she is

> just too overwhelmed today, so I decided to hop on and get

> started for

> myself! We are less than 24 hours into this so still on a

> huge

> learning curve, her first visit to a lid specialist is

> another week

> away. Any advice on the best way to support my sister as a

> new single

> mom through this process would be extremely helpful. I love

> them both

> so much! Thank you!

[Guest guest]

>

> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I

NOTICED

> HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS

HE4

> HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3

> DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A

> DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD

> TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD

STICKY

> EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS

I

> WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND

CHILD

> I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY

THEY

> READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER

> 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST

THE

> EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO

> WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS

> BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING

> CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE

> GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE

> YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS

> CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY

> EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE

> MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT

> WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID

NORMALLY

> AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT

AT

> THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS

> CINDY

>

Hi

Hey you will get all the advise and help of where to go and not to

mention the support from this group!. I know it must be worrying for

you, and sometimes just to understand the sydrome and indeed chat to

parents going through or gone through the same thing is so helpful.

My Daughter os 5 nearly and we faced the same shook shoulders

as you, I guess that BPE is still rare that people just dont

understand so they look for another option.

Take Care and Good Luck, xx

[Guest guest]

hello there and welcome to the group!! i looked at your son's pictures and woo wee what a cutie!! if you look at all of our (people in the group) pictures of the kids as a newborn you actually see that the children look almost identical its crazy... so at first glance your son resembles a few pics of m son who does have BPES, first make sure you get a first second 3rd  25th oppinion from the doctors, if anything just to ease your mind. this group here will help you with alot of your questions... very knowledgeable..  there are families here that have generations of BPES in it, albeit the surgery options have changed tremendously and also different doctors do different surgeries . my son Lynden (see pics) had his first surgery at 5 weeks old.. but for him that was needed as his pupils were covered almost 98% so he needed surgery early, not everyone needs it early though... hence the different opinions. shireen can give you the link on all the genetic stuff.. there is a link floating around here somewhere... Lynden is the first in our family (glitch in the DNA thats how he got it) anyway keep us all posted on your visit to the docs!!Tonikka and lyndenedmonton CANADAOn 28-Jul-08, at 8:26 AM, cindy wrote:HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST THE EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKSCINDY Tonikka & ChrisLynden,Hunter,Avery

[Guest guest]

Hi ,

Your story is exactly like ours! Ethan C (wearing pumpkin suit in pics) is our 2nd son, he was born with Blepharophimosis (first in our families?) we to were concerned when he didn't open his eyes after he was born! The specialist that checked him said he did have eyes under there though so that was a relief! It took a few different appts with specialists until we finally got a name for his eye condition...Our first son Tyler has the hugest blue eye's, and we remembered that special moment as soon as he was born when he opened his eyes right away and was looking all around the room, he was so nosey! We were expecting and waiting for that moment with Ethan but it didn't happen....It also took a few day's for his eyes to even open 2 mm...We were so excited though! Just to see those beautiful blue eyes, even though it was just a little bit of them....Ethan is now 5 1/2, has had NO surgeries as he adapted well by raising his eyebrows, he never had to tilt his head back to see which is common with people who have bleph, he did need glasses at age 4 as he had an astigmatism, probably due to his eyelids...but not necessary as an astigmatism is common in anyone! He looks SO cute with his glasses though and they make his eyes look a bit bigger:) Our ophthalmologist said he will see us in a few months and talk about a date for his first surgery next year when he turns 6, Ethan is quite tall so they can use his *fascia Lata* (tendon) from the side of his leg to assist in the lift rather than using donor fascia lata....they much prefer to use the patients own...I totally recommend not rushing into surgery unless of course they need it for eyesight reasons but if not leave any surgeries until they are older...there little faces grow so much and to make them go through surgery when it's not needed is pointless....We love the way Ethan looks, his face is so angelic:) Sure we get stares, although not with his glasses on...When he was a baby people used to think he was sleeping all the time when he was actually wide awake! I'd get asked if he was half asian...with his blonde hair... The funniest comment we got was so innocent from a lady in a shop who Ethan was talking to, she said to him, *open your eyes or your going to walk into something*! I had to laugh...Ethan is our social butterfly, he talks to ANYONE!!!! He lights up the room:) If you e-mail me I'd be happy to send you pics of him so you can see what he looks like over the years:) tltne@... Take care

leanne NZ

-- blepharophimosis Re: NEW MEMBER

>> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED > HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 > HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 > DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A > DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD > TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY > EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I > WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD > I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY > READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER > 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST THE > EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO > WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS > BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING > CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE > GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE > YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS > CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY > EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE > MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT > WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY > AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT > THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS> CINDY>Hi Hey you will get all the advise and help of where to go and not to mention the support from this group!. I know it must be worrying for you, and sometimes just to understand the sydrome and indeed chat to parents going through or gone through the same thing is so helpful.My Daughter os 5 nearly and we faced the same shook shoulders as you, I guess that BPE is still rare that people just dont understand so they look for another option.Take Care and Good Luck, xx

[Guest guest]

Hi

I am up in Glasgow and I was reading your post. Jack is mega cute in

those photos. They are lovely.

I understand your concerns, worry and everything and I really hope you

get the answers and help you need which, between this website and your

surgeon Im sure you will.

I have BP, my sister, my dad, my neice and one of my 3 sons. My son

who is 4 1/2 yrs has just undergone surgery around 2 weeks ago. He

starts school in August. He is doing great. You will read many

different stories, various surgeries,amounts of surgeries, materials

used, reasons for surgery, cosmetic or not etc and each person is

different, my doctor reminded me that recently.

The decisions is all yours and your partners and it is a very hard

decision but Im sure with all the advice, you will get there. There

is no right or wrong thing and you do what you think is right.

Right up until the very morning Sam had his surgery we still had not

decided however, after speaking to Dr Kemp, its now done and over.

Lots of luck to you all, keep going and Im sure Jack will be as happy

and confident as Sam is. Sam is one of the most popular boys in his

nursery with loads of mates and the girls love him because he is so

laid back. He makes me so proud and Im going to be crying at the

school gates in a couple of weeks time.

Take care and a big cuddle to little baby Jack

, Glasgow, 32 yrs old.

xxxx

>

> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED

> HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4

> HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3

> DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A

> DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD

> TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY

> EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I

> WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD

> I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY

> READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER

> 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST THE

> EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO

> WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS

> BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING

> CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE

> GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE

> YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS

> CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY

> EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE

> MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT

> WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY

> AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT

> THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS

> CINDY

>

[Guest guest]

Hi Thanks so much for replying its really nice to hear from people who know and understand the condition as we havent met anyone yet.and as nobody on either sidesof our family has it weve never even heard of it.did sam open his eyes straight away from birth or was it a gradual thing.jacks 3 weeks old today and he couldnt open them at all the first week.he opens them a tiny bit about 2 mm each eyelid but not both at the same time which is why they want to operate on him so young i think.did sam not have any operations until he was older?sorry to ask so many questions i hope you dont mind?where did you have your surgerys?we are under moorfields eye hospital for jack weve got our second appointment this friday thanks for your time cindy i looked at your photos by the way you have 3 gorgeous boys there.denisecam1

<denisecam1@...> wrote: Hi I am up in Glasgow and I was reading your post. Jack is mega cute inthose photos. They are lovely.I understand your concerns, worry and everything and I really hope youget the answers and help you need which, between this website and yoursurgeon Im sure you will.I have BP, my sister, my dad, my neice and one of my 3 sons. My sonwho is 4 1/2 yrs has just undergone surgery around 2 weeks ago. Hestarts school in August. He is doing great. You will read

manydifferent stories, various surgeries,amounts of surgeries, materialsused, reasons for surgery, cosmetic or not etc and each person isdifferent, my doctor reminded me that recently. The decisions is all yours and your partners and it is a very harddecision but Im sure with all the advice, you will get there. Thereis no right or wrong thing and you do what you think is right.Right up until the very morning Sam had his surgery we still had notdecided however, after speaking to Dr Kemp, its now done and over. Lots of luck to you all, keep going and Im sure Jack will be as happyand confident as Sam is. Sam is one of the most popular boys in hisnursery with loads of mates and the girls love him because he is solaid back. He makes me so proud and Im going to be crying at theschool gates in a couple of weeks time.Take care and a big cuddle to little baby Jack, Glasgow, 32 yrs

old.xxxx>> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED > HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 > HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 > DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A > DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD > TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY > EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I > WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD > I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY > READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER > 2HRS OF TESTS TO HIS EYES THEY

DECIDED HES EYES ARE FINE ITS JUST THE > EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO > WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS > BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING > CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE > GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE > YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS > CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY > EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE > MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT > WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY > AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT > THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS>

CINDY>

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[Guest guest]

HiYeh he did on day 2 but just a little same as Jack. We left hospital the day after he was born and I remember the doctors pulling his eye lids right up to see inside and you know they never mentioned a thing. I hadnt said to them that I thought he had it (dont ask why - maybe because I knew I would have it referred through my doctor when I saw her not long after the birth)He had surgery now because he is going to school. He has had none before this. The surgeons appear to do what is necessary and when. Sams eyesight has only been slightly affected. He has the typical astigmatism and is slightly long sighted. He has now had the same surgery as me. I shall post an up to date photo on the site. Sam didnt need to have it before this because his eyesight was not too badly affected or developing a

squint etc.. The surgeons always intended to operate prior to school and we had 2 surgeries in 1. His surgery was at yorkhill in Glasgow however only because its the childrens hospital. He attends Gartnavel and sees Dr Kemp. Good luck for friday. I hope all goes ok and that you are feeling even a little better about it all after chatting to people about it. DEnisexx Hi I am up in Glasgow and I was reading your post. Jack is mega cute inthose photos. They are lovely.I understand your concerns, worry and everything and I really hope youget the answers and help you need which, between this website and yoursurgeon Im sure you will.I have BP, my sister, my dad, my neice and one of my 3 sons. My sonwho is 4 1/2 yrs has just undergone surgery around 2 weeks ago. Hestarts school in August. He is doing great. You will read

manydifferent stories, various surgeries,amounts of surgeries, materialsused, reasons for surgery, cosmetic or not etc and each person isdifferent, my doctor reminded me that recently. The decisions is all yours and your partners and it is a very harddecision but Im sure with all the advice, you will get there. Thereis no right or wrong thing and you do what you think is right.Right up until the very morning Sam had his surgery we still had notdecided however, after speaking to Dr Kemp, its now done and over. Lots of luck to you all, keep going and Im sure Jack will be as happyand confident as Sam is. Sam is one of the most popular boys in hisnursery with loads of mates and the girls love him because he is solaid back. He makes me so proud and Im going to be crying at theschool gates in a couple of weeks time.Take care and a big cuddle to little baby Jack, Glasgow, 32 yrs

old.xxxx>> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED > HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 > HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 > DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A > DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD > TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY > EYES WITHOUT EVEN SEEING HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I > WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD > I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY > READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER

> 2HRS OF TESTS TO HIS EYES THEY

DECIDED HES EYES ARE FINE ITS JUST THE > EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO > WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS > BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING > CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE > GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE > YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS > CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY > EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE > MY BEAUTIFUL BOY.ITS JUST SO WORRYING.THEYVE MENTIONED ASURGERY BUT > WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY > AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT > THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS>

CINDY> Not happy with your email address?

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[Guest guest]

Hi again with jack you can hardly physically pull up his eyelids the skin is that tight or not enough im not sure what the correct terminology is.i look forward to seeing some new pics the old ones are cute. cheers cindyD Cameron <denisecam1@...> wrote: HiYeh he did on day 2 but just a little same as Jack. We left hospital the

day after he was born and I remember the doctors pulling his eye lids right up to see inside and you know they never mentioned a thing. I hadnt said to them that I thought he had it (dont ask why - maybe because I knew I would have it referred through my doctor when I saw her not long after the birth)He had surgery now because he is going to school. He has had none before this. The surgeons appear to do what is necessary and when. Sams eyesight has only been slightly affected. He has the typical astigmatism and is slightly long sighted. He has now had the same surgery as me. I shall post an up to date photo on the site. Sam didnt need to have it before this because his eyesight was not too badly affected or developing a squint etc.. The surgeons always intended to operate prior to school and we had 2 surgeries in 1. His surgery was at yorkhill in Glasgow however only because its the childrens hospital.

He attends Gartnavel and sees Dr Kemp. Good luck for friday. I hope all goes ok and that you are feeling even a little better about it all after chatting to people about it. DEnisexx Hi I am up in Glasgow and I was reading your post. Jack is mega cute inthose photos. They are lovely.I understand your concerns, worry and everything and I really

hope youget the answers and help you need which, between this website and yoursurgeon Im sure you will.I have BP, my sister, my dad, my neice and one of my 3 sons. My sonwho is 4 1/2 yrs has just undergone surgery around 2 weeks ago. Hestarts school in August. He is doing great. You will read manydifferent stories, various surgeries,amounts of surgeries, materialsused, reasons for surgery, cosmetic or not etc and each person isdifferent, my doctor reminded me that recently. The decisions is all yours and your partners and it is a very harddecision but Im sure with all the advice, you will get there. Thereis no right or wrong thing and you do what you think is right.Right up until the very morning Sam had his surgery we still had notdecided however, after speaking to Dr Kemp, its now done and over. Lots of luck to you all, keep going and Im sure Jack will be as happyand confident as Sam is. Sam is

one of the most popular boys in hisnursery with loads of mates and the girls love him because he is solaid back. He makes me so proud and Im going to be crying at theschool gates in a couple of weeks time.Take care and a big cuddle to little baby Jack, Glasgow, 32 yrs old.xxxx>> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED > HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 > HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 > DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A > DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD > TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY > EYES WITHOUT EVEN SEEING

HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I > WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD > I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY > READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER > 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST THE > EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO > WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS > BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING > CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE > GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE > YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS > CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY > EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE > MY BEAUTIFUL BOY.ITS JUST SO

WORRYING.THEYVE MENTIONED ASURGERY BUT > WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY > AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT > THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS> CINDY> Not happy with your email address? Get the one you really want - millions of new email addresses available now at Not happy with your email address? Get the one you really want - millions of new email addresses available now at

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[Guest guest]

No worries, That was like Sam but she gave it a good try. You will notice a difference over time with Jacks eyes, they say the face is constantly growing and developing. I dont know if Jack has the flatter bridge across the nose. My doctor told me that will grow out as Sam gets older. There is also another part which is at the bottom lower lid at the right where it is slightly seperate from the eye. To be honest I hadnt noticed it as much in Sam until the doctor pointed it out and I thought mine was age related!!!You can let us know how you get onTake care denise x Hi I am up in Glasgow and I was reading your post. Jack is mega cute inthose photos. They are lovely.I understand your concerns, worry

and everything and I really

hope youget the answers and help you need which, between this website and yoursurgeon Im sure you will.I have BP, my sister, my dad, my neice and one of my 3 sons. My sonwho is 4 1/2 yrs has just undergone surgery around 2 weeks ago. Hestarts school in August. He is doing great. You will read manydifferent stories, various surgeries,amounts of surgeries, materialsused, reasons for surgery, cosmetic or not etc and each person isdifferent, my doctor reminded me that recently. The decisions is all yours and your partners and it is a very harddecision but Im sure with all the advice, you will get there. Thereis no right or wrong thing and you do what you think is right.Right up until the very morning Sam had his surgery we still had notdecided however, after speaking to Dr Kemp, its now done and over. Lots of luck to you all, keep going and Im sure Jack will be as happyand confident

as Sam is. Sam is

one of the most popular boys in hisnursery with loads of mates and the girls love him because he is solaid back. He makes me so proud and Im going to be crying at theschool gates in a couple of weeks time.Take care and a big cuddle to little baby Jack, Glasgow, 32 yrs old.xxxx>> HI OUR SON WAS BORN ALMOST 3 WEEKS AGO AND WHEN HE WAS BORN I NOTICED > HE COULDNT OPEN HIS EYES.I MENTIONED IT TO THE NURSES IN SCBU AS HE4 > HAD SOME TROUBLE BREATHING FROM BIRTH BUT THEY IGNORED ME.AFTER 3 > DAYS WE WERE ALLOWED TO GO HOME AND I THOUGHT MAYBE WE D NOTICE A > DIFFERENCE IN HIS EYES HOWEVER THERE WAS NO CHANGE.IN THE END I HAD > TO ARGUE TO SEE SOMEONE AS THEY KEPT TRYING TO TELL ME HE HAD STICKY > EYES

WITHOUT EVEN SEEING

HIM.THANKFULLY JACK ISNT MY FIRST BABY AS I > WOULD PROBABLY LEFT IT ANOTHER WEEK OR SO BUT AS HES MY SECOND CHILD > I KNEW HE SHOULD BE USING HIS EYES EVEN AT A FEW DAYS OLD.ANYWAY THEY > READMITTED US TO HOSPITAL AND WE SAW A PAED OPTHAMOLOGIST AND AFTER > 2HRS OF TESTS TO HIS EYES THEY DECIDED HES EYES ARE FINE ITS JUST THE > EYELIDS.THE OPTHAMOLOGIST REFFERED US TO DR UDDIN AT MOORFIELDS WHO > WE SAW WHEN JACK WAS 9 DAYS OLD.HE SEEMS TO THINK IT IS > BLEPHAROPHIMOSIS AND WANTS TO SEDND JACK TO THE GENETIC TESTING > CLINIC TO BE SURE THE PAED OPTHAMOLOGIST DIDNT THINKIT WAS.WE ARE > GOING BACK TO SEE DR UDDIN FRIDAY HAVENT HAD THE GENETIC TEST DONE > YET AND ARE REALLY AFRAID AND CONFUSED.WE HAVE NO HISTORY OF THIS > CONDITION IN EITHER SIDE OF OUR FAMILY.DOES ANYONE ELSE HAVE ANY > EXPERIENCES LIKE THIS.I PUT SOME PICTURES UP OF JACK FOR ALL TO SEE > MY

BEAUTIFUL BOY.ITS JUST SO

WORRYING.THEYVE MENTIONED ASURGERY BUT > WE DONT KNOW WHAT ITL ENTAIL AND WHEN THEY L DO IT.THEY SAID NORMALLY > AT 4 TO 6 MONTHS BUT AS HIS EYES ONLY OPEN ABOUT 2MM EACH AND NOT AT > THE SAME TIME THEY SAID THEY MAY DO IUT AT 6 WEEKS OR SO.THANKS> CINDY> Not happy with your email address? Get the one you really want - millions of new email addresses available now at Not happy with your email address? Get the one you really want - millions of new email addresses available now at Not happy with your email address?

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