baby with bleph

[Guest guest]

Hi Leanne,

It is so good to hear from someone in NZ.

Like your son, our daughter in the first in the family with BPES. I have too older children who don't have BPES. We were also dumbfounded. Were told that with DNA testing, they can tell if its a new 'mutation' (hate that word) or if it has come from my husband or my genetic makeup. We haven't had this test done yet, I'm waiting for Alyssa to be abit older before we still her with a needle as they need quite abit of blood for this test. We have also been told that they will do surgery when she is about 4 years. Before school. Unless her eye lids drop lower and start to block her vision, then they will operate sooner. We have regular checkups (approx. every 5 Months) will the eye specialist at Auckland Hospital to monitor this and also to check that she is using both eyes equally so that one doesn't become lazy. She has one lid 1mm lower than the other. she also puts her head back to enable her to see, and have been told to take her to a osteopath regularly to check her neck. Apart from her eyes, Alyssa is also a happy child, and development wise, shes actually ahead of herself. Already talking 3 words at 8 Months old. We have no concerns in this area.

We are also concerned with comments how to respond to others so that Alyssa becomes comfortable and not embarrassed. We also want to teach her how to respond easily to the various comments she will get. Unfortunately we haven't yet sussed this one out ourselves.

I would love to know in what part of NZ you are? We are in Auckland and would love to meet up face to face with someone like yourself. You can email directly on bobjnr@... . I would be happy to give you my phone number to your own email address. Look forward to hearing from you and anyone else who may be in NZ. Perhaps we could form a BPES get together for the year 2004 for all of us on this side of the world.

blepharophimosis baby with blephHi there...I am from NEW ZEALAND, and me and my husband have a beautiful 6 month old son who was born with blepharophimosis, NO one in either of our families have this nor do we, and our 1st son doesn't have it either! he has huge blue eyes:)...so it was all a huge SHOCK??? where did it come from?...he is the happiest wee man though, he just saw the eye specialist again, and he has said that he won't do any surgery until he is about 5 years old, thats when the tendon in his leg is right enough for doing the surgery, he has the wide flat bridge, and narrow eyelids, he uses the chin up posture to see how we do, I just worry that his eyesight may become affected from the strain, but the dr assures us, he is fine because he has adapted the chin up position, I worry about him being teases in school, we get the stares when we're out, I have even been asked if my husband is asian? I guess people see it like that, or that he might have downs, which he doesn't, hes the happiest little baby boy, hes perfect to us, but if anyone out there wants to shed some more light on this, I would love to hear from you:)...like when have you or your children had surgery, at what age and what procedure??? looking forward to hearing from someone soon...bye from NZ:)

[Guest guest]

Hi there...I am from NEW ZEALAND, and me and my husband have a

beautiful 6 month old son who was born with blepharophimosis, NO one

in either of our families have this nor do we, and our 1st son

doesn't have it either! he has huge blue eyes:)...so it was all a

huge SHOCK??? where did it come from?...he is the happiest wee man

though, he just saw the eye specialist again, and he has said that

he won't do any surgery until he is about 5 years old, thats when

the tendon in his leg is right enough for doing the surgery, he has

the wide flat bridge, and narrow eyelids, he uses the chin up

posture to see how we do, I just worry that his eyesight may become

affected from the strain, but the dr assures us, he is fine because

he has adapted the chin up position, I worry about him being teases

in school, we get the stares when we're out, I have even been asked

if my husband is asian? I guess people see it like that, or that he

might have downs, which he doesn't, hes the happiest little baby

boy, hes perfect to us, but if anyone out there wants to shed some

more light on this, I would love to hear from you:)...like when have

you or your children had surgery, at what age and what procedure???

looking forward to hearing from someone soon...bye from NZ:)

[Guest guest]

My daughter had her surgery done at 13 months old, (the slings for the upper

eyelid ptosis) although they wanted to do it much earlier as young as 3 months

old. They were concerned about her starting to walk and not being able to see

her way around very good. (The severity of cases differs in each child though, I

think) She looks great now. I to am worried about what other children might say

when she starts school. Her Dr. is going to do more surgery at the age of 3 or

4, before she starts preschool to correct the rest of it.

[Guest guest]

I can completely relate to you. My daughter who is now 16 months old

was diagnosed shortly after birth, my fiance nor I had ever heard of

this disease. I was scared and shocked. I didn't know what this meant

except for the fact that my daugter would have surgery at 3 weeks

old. They also told me that she would look a little differant, kind

of have " asian eyes " is how he explained it to me. This was the first

surgery she had, but she will have another around preschool. Her dr

explained to me that this one will be a little more cosmetic and her

slings will be more perminent material. If her eyes to begin to drop

before that time, he may do it earlier. Her first surgery was for the

slings in her lids and they slit the corner of her left eye. I was

told that it is common for people with bleph to have the left eye

more sever? Not sure though.

People stare at us all the time when we go places, look down at her

and then up at us. Not quite sure if they are looking to see if one

of us has small eyes or what. I find it very rude though and it

upsets me that one day she will understand what is going on and that

people can be so rude. A friend of mine that I used to work with saw

Brooklyn for the first time since her surgery and had the nerve to

say to me " what is wrong with her eyes? I thought they were going to

fit it? " Not only did she have a look of disguist on her face, but

she was completely rude. I no longer will consider her a friend.

However, the other day we were at the mall and 3 ladies came up to us

and told us that our daughter has the most beautiful eyes that they

had ever seen.

It is nice to be able to share my experiences with you.

Dana-

Brooklyns mom

> Hi there...I am from NEW ZEALAND, and me and my husband have a

> beautiful 6 month old son who was born with blepharophimosis, NO

one

> in either of our families have this nor do we, and our 1st son

> doesn't have it either! he has huge blue eyes:)...so it was all a

> huge SHOCK??? where did it come from?...he is the happiest wee man

> though, he just saw the eye specialist again, and he has said that

> he won't do any surgery until he is about 5 years old, thats when

> the tendon in his leg is right enough for doing the surgery, he has

> the wide flat bridge, and narrow eyelids, he uses the chin up

> posture to see how we do, I just worry that his eyesight may become

> affected from the strain, but the dr assures us, he is fine because

> he has adapted the chin up position, I worry about him being teases

> in school, we get the stares when we're out, I have even been asked

> if my husband is asian? I guess people see it like that, or that he

> might have downs, which he doesn't, hes the happiest little baby

> boy, hes perfect to us, but if anyone out there wants to shed some

> more light on this, I would love to hear from you:)...like when

have

> you or your children had surgery, at what age and what procedure???

> looking forward to hearing from someone soon...bye from NZ:)