Re: Naomi C. - blinking with eye tapes and dry eyes

[Guest guest]

Hi Leanne,

Pumpkin-suit Ethan is indeed a cuddly bundle of joy! Tyler looks

like a really responsible and loving older brother too.

Naomi blinks quite well with the tapes, actually. We realised that

the muscles involved in eye opening and blinking are quite separate -

the levator palpebrae for lid opening which is deficient in BPES

and the orbicularis oculi for blinking and squeezing the eyes shut,

which work fine. Thus, even with lid tapes (which mimic the function

of the levator from the outside), the blink function is still

preserved. The same issues will arise after surgery as well.

Naomi's doctors did warn about dry eyes but Naomi hasn't developed

the problem so far. I guess living in a humid country like Singapore

minimises the drying. I suspect that the dry eyes may be an issue in

less humid and temperate countries like NZ, Australia, North America

and Europe. Dry eyes can be easily overcome by artificial tears or

lubricants, either liquid-based or gel-based. Depending on which

country you're in, the tears/lubricants may either be prescription

only, pharmacy only or OTC medications.

Naomi just turned 2 years old 2 weeks ago (i.e., terrible twos!!!).

She _IS_ a wee child, tipping the scales at 9kg. We need to

constantly remind ourselves that she isn't a baby anymore and needs

disciplining just like her older sister!

You brought up an interesting point about Ethan bumping into

furniture, which I agree all children do. What we realised is that

kids with BPES tend to tilt their head backward excessively to try

to compensate for the limited lid opening. This changes their centre

of gravity (infants' heads are relatively large compared to their

bodies) when they are learning to sit, crawl and walk and thus may

contribute to the appararent greater clumsiness. Which is one of the

reasons why we were so diligent about the taping since the day she

was diagnosed. The backward head tilt which we observed in her

earlier months was reversed the moment the tapes went on.

Hope this helps! Merry Christmas in advance, too!

Ern C.

> I just had a question on taping the eyes, as I have not heard of

this

> procedure before either. How does Naomi blink with having the tape

there?

> does she get dry eyes from wearing the tape? How old is she? We

have been

> told that surgery would be done when Ethan is around 4, before he

starts

> school, but at his last appt at 18 mths, the opthalmologist said

he may do a

> temporary ptosis lift as his top eyelid is quite tight and does

not have

> much movement? His eyesight is great though, no problems there,

nor with

> anything else, he runs around like our 1st son did, you wouldn't

know he had

> bleph, besides looking at him of course:) he tends to run into

things, but

> what toddler doesn't:) It makes the decision to have surgery at 2

a bit

> confusing, as he seems great the way he is! and operating on that

flawless,

> untouched face seems so sad for us to even think about, but it is

whats best

> for his eyesight in the end.

>

> Talk soon.....leanne and family (NZ)

[Guest guest]

Hi Ern,

Thanks for the nice reply:) Yes, Tyler is a great big brother, and loves Ethan to bits, tend to forget he is only a toddler though, and gets a little bit to rough with him:( but alass, loves him heaps!

Interesting about the whole blinking process, we learn something new everyday:) When we watch Ethan blinking he tends to blink with lowering his eyebrow, just like he raises it to see better! He has never had a chin up posture either! He has always looked straight ahead to see, thats why when you watch him running around, you would never believe he had bleph at all! he's a little champ:)

Ethan has never showed signs of dry eyes, although lately he has been closing them as if they are sore and rubbing them, he had very crusty eyes more so when he was a baby after sleeping, which is very comman in bpes.

Wishing you and your family a very merry christmas also:) and everyone else in the group as well!!! and a safe new-year!

Leanne and family:)

-- blepharophimosis Re: Naomi C. - blinking with eye tapes and dry eyes

Hi Leanne,

Pumpkin-suit Ethan is indeed a cuddly bundle of joy! Tyler looks

like a really responsible and loving older brother too.

Naomi blinks quite well with the tapes, actually. We realised that

the muscles involved in eye opening and blinking are quite separate -

the levator palpebrae for lid opening which is deficient in BPES

and the orbicularis oculi for blinking and squeezing the eyes shut,

which work fine. Thus, even with lid tapes (which mimic the function

of the levator from the outside), the blink function is still

preserved. The same issues will arise after surgery as well.

Naomi's doctors did warn about dry eyes but Naomi hasn't developed

the problem so far. I guess living in a humid country like Singapore

minimises the drying. I suspect that the dry eyes may be an issue in

less humid and temperate countries like NZ, Australia, North America

and Europe. Dry eyes can be easily overcome by artificial tears or

lubricants, either liquid-based or gel-based. Depending on which

country you're in, the tears/lubricants may either be prescription

only, pharmacy only or OTC medications.

Naomi just turned 2 years old 2 weeks ago (i.e., terrible twos!!!).

She _IS_ a wee child, tipping the scales at 9kg. We need to

constantly remind ourselves that she isn't a baby anymore and needs

disciplining just like her older sister!

You brought up an interesting point about Ethan bumping into

furniture, which I agree all children do. What we realised is that

kids with BPES tend to tilt their head backward excessively to try

to compensate for the limited lid opening. This changes their centre

of gravity (infants' heads are relatively large compared to their

bodies) when they are learning to sit, crawl and walk and thus may

contribute to the appararent greater clumsiness. Which is one of the

reasons why we were so diligent about the taping since the day she

was diagnosed. The backward head tilt which we observed in her

earlier months was reversed the moment the tapes went on.

Hope this helps! Merry Christmas in advance, too!

Ern C.

> I just had a question on taping the eyes, as I have not heard of

this

> procedure before either. How does Naomi blink with having the tape

there?

> does she get dry eyes from wearing the tape? How old is she? We

have been

> told that surgery would be done when Ethan is around 4, before he

starts

> school, but at his last appt at 18 mths, the opthalmologist said

he may do a

> temporary ptosis lift as his top eyelid is quite tight and does

not have

> much movement? His eyesight is great though, no problems there,

nor with

> anything else, he runs around like our 1st son did, you wouldn't

know he had

> bleph, besides looking at him of course:) he tends to run into

things, but

> what toddler doesn't:) It makes the decision to have surgery at 2

a bit

> confusing, as he seems great the way he is! and operating on that

flawless,

> untouched face seems so sad for us to even think about, but it is

whats best

> for his eyesight in the end.

>

> Talk soon.....leanne and family (NZ)