RE: The Fun Never Ends

[Guest guest]

Hi

Donna

Welcome

to the group – there are an astonishing 650 or so people in this

group, many have (or are parents, grandparents etc) just BPES. Some have one of

the syndromes that have BPES and something else too.

I

can imagine it must be incredibly frustrating trying to get information.

Did

Ying get diagnosed with just Blepharophimosis or with the full BPES?

You

may find it useful to look here:

http://freespace.virgin.net/andy.bowles/index_Page338.htm

click

on the first article. It is intended for medics and scientists – but some

if it can be understood easily by anyone.

Where

abouts do you live Donna? I live in London, England.

Take

care

Shireen

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of donnat65

Sent: 06 November 2007 21:27

blepharophimosis

Subject: blepharophimosis The Fun Never Ends

Ying, age 27 months, was diagnosed with

Blepharophimosis in April. I

understood that it affects her facial structure – her eyes and brow

ridge and her nose. What I wasn't anticipating is that it also

affects her mouth. She had her first dental visit last week, and the

ped dentist says that she will probably need surgery in the future to

correct her jaw – the top is too short and the bottom too long. I'd

noticed a slight under bite, but I didn't realize that her whole jaw

is out of whack. Now, I'm learning that she may have some other type

of associated syndrome that might account for her small size. (She

currently weighs only 18 pounds and is often mistaken for an infant.)

Apparently Blepharophimosis is associated with other syndromes that

have stunted growth as a symptom? Anyone know about this?

Donna, feeling frustrated at not knowing what all I don't know about

this

[Guest guest]

Hi donna if you check post 5613- 5620 we had a conversation about this very

thing

regarding the jaw. My son is now 10 and he has been using an expander with

headgear he

wears nightly for 14 hours, after all of our CT's and Xrays it was said to us

that his

underbite most likely was caused by his flatter upper cranial facial structure

(but not

guaranteed) as anyone can also have an underbite.... my son's correction has

been fast

and he is about to have it off after only 9 months (was supposed to be 2 years)

so check out the posts!!

Tonikka and Lynden

CANADA

>

> Ying, age 27 months, was diagnosed with Blepharophimosis in April. I

> understood that it affects her facial structure – her eyes and brow

> ridge and her nose. What I wasn't anticipating is that it also

> affects her mouth. She had her first dental visit last week, and the

> ped dentist says that she will probably need surgery in the future to

> correct her jaw – the top is too short and the bottom too long. I'd

> noticed a slight under bite, but I didn't realize that her whole jaw

> is out of whack. Now, I'm learning that she may have some other type

> of associated syndrome that might account for her small size. (She

> currently weighs only 18 pounds and is often mistaken for an infant.)

> Apparently Blepharophimosis is associated with other syndromes that

> have stunted growth as a symptom? Anyone know about this?

>

> Donna, feeling frustrated at not knowing what all I don't know about

> this

>