Re: NEW MEMBER HI Cindy

[Guest guest]

Hi , and Jack of course

I must say you were right when you said you have a beautfiul baby boy, he is simply gorgeous,

I had a look at your photos. I would love to hear how you got on with your appointment this week.

Me and Emy (daughter 12) have BPES. When I looked at your photos the first one I thought yes, looks like emy when she was born, rising eyebrows and shut eyes. HOwever as I went to the other photos I couldnt be certain. With all of these things we need to get professional diagnosis before anything else.

If it is Bleph, my first thing to say DONT WORRY I know its easy to say, and hard to do when you have a beautiful bundle, however Emy and I are living our lives confidently and fantasticly well.

Bleph and BPES can be genetical (passed down) but also sparadoc (one offs) mine was, before me nobody else had it in our family. My mum sounds like you, she didnt take no for an answer too, and because of her I am the person I am today, so keep doing what you are doing, and keep asking questons.

Please please feel free to mail back and talk. Where in the country are you?

I would love to know how you get on on Friday.

Clare and Emy Hertfordshire UK

From: cindy <c.tanju@...>Subject: blepharophimosis NEW MEMBERblepharophimosis Date: Monday, July 28, 2008, 3:26 PM

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

[Guest guest]

Hi Clare thanks for emailing.we are in croydon surrey we are off to moorfields this friday to see a opthalmic plastic surgeon called dr jimmy uddin he wants to send jack to a genetic testing clinic before he decides when he operates etc.the paed opthamologist who we saw today didnt think it was bpes but the plastic surgeon did.am not sure who to believe we have to wait for the genetic tests to be done.have both you and your daughter had surgeries?if you did what age where they done at.its a fine line with new babys as to how early to start.mr uddin said in an ideal world he d wait til jack was 4 to 6 months old but as early as 6 weeks if he isnt opening his eyes enough which we dont think he is plus he only opens one at a time.no one else in either of our families has this weve never heard of it.is it that rare a condition? sorry for all the questions itsjust i feel like

someone understands me at last the past 3 weeks have been hell take carecindy Clare Teale <clareteale@...> wrot Hi , and Jack of course I must say you were right when you said you have a beautfiul baby boy, he is simply gorgeous, I had a look at your photos. I would love to hear how you got on with your appointment this week. Me and Emy (daughter 12) have BPES. When I looked at your photos the first one I thought yes, looks like emy when she was born, rising eyebrows and shut eyes. HOwever as I went to the other photos I couldnt be certain. With all of these things we need to get professional diagnosis before anything else. If it is Bleph, my first thing to say DONT WORRY I know its easy to say, and hard to do when you have a beautiful bundle, however Emy and I are living our lives confidently and fantasticly well. Bleph and BPES can be genetical (passed down) but also sparadoc (one offs) mine was, before me nobody else had it in our family. My mum sounds like you, she didnt take no for an answer too, and because of her I am the person I am today, so keep doing what you are doing, and keep asking questons. Please please feel free to mail back and

talk. Where in the country are you? I would love to know how you get on on Friday. Clare and Emy Hertfordshire UK From: cindy <c.tanjutalk21>Subject: blepharophimosis NEW MEMBERblepharophimosis Date: Monday, July 28, 2008, 3:26 PM 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

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[Guest guest]

Hi

We were in exactly in your position 3 and a half years ago with our daughter Holly. Holly is the first in our family to have BPES and when she was born I was walking around the birth centre saying 'she hasn't opened her eyes yet?' and midwives kept saying 'she will, she was born two weeks early, you wait'. Well I did wait and even at 6 weeks old they were only like slits so I asked my GP at her 6 week check. He said nothing was wrong with her, 'just the way she is'. Not very helpful!!?? My intuition, like you, meant I asked for a second opinion and they referred us to our local hospital in Portsmouth, Hampshire and they then diagnosed Holly, from a book, aged 4 months old with BPES. I must admit as they get older they learn to use the muscle in their foreheads to open their eyes so it does improve with time. Look at photos of Holly Ellen and you can see what she looked like before her operation. Due to

her lids covering her pupils they operated aged 18 months which made such a difference to her life as she then wasn't tilting her head to enable her to see.

I must admit at first I found it really hard to come to terms with and understand but over the years, through this support group, it has helped me a lot to cope with other peoples comments when out and about! I used to get the usual 'aaargh she's asleep' when she was sat in her pram playing with toys and even had people ask if she was down syndrome, I suppose because she has quite a flat bridge of the nose.

Hope I'm not waffling too much but I just wanted to explain our experiences. Holly is 3 now and a real character and I must admit I do forget she has BPES until we have to go to Moorfields hospital for check ups - we are back on Monday 4th for a check up! I love the way she is and wouldn't change her for the world. The way I look at it is they were purely born with small eyes and no muscle in the eyelids and just need a bit of surgery help with their eyelids. Holly is due two more operations in future to do the final eye lift using muscle from her leg and also to take the excess skin from inside her eyes so you will be able to see her tear ducts.

If you have any further questions - please fire away. Good luck on Friday - Moorfields is an excellent hospital and wierdly enough they see this condition a lot so not rare to them!!

Love Lucy (Hampshire, UK)

From: cindy <c.tanjutalk21 (DOT) com>Subject: blepharophimosis NEW MEMBERblepharophimosisDate: Monday, July 28, 2008, 3:26 PM

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

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