Re: Things are going very fast now...!

[Guest guest]

Hi, So is only a few weeks old, why have they decided to do surgery SO young? I remember when Ethan was only a few weeks old his eyes were very closed for the the 1st few weeks, but thats becasue he was still so new, he learned to use his forehead to open his eyes wider, and he looks pretty good now, and the Dr has suggested surgery when he is about 4, better results if the child is older, Why have they determined doing surgery when she is only 1 month old??? Seems so little? I would think they would atleast give her a couple months to see what her eyes do then as she will be a little older and have more control of opening her eyes.

-- blepharophimosis Things are going very fast now...!

Hello Group,

Our granddaughter was born on April 2 this year, she has BPES. The familydoctor sent them ( and her parents) to the local Hospital here in Purmerend (80.000 inh.) - The Netherlands. Two eye-specialists looked at her and concluded that this was far above their expertise and they sent them to Vrije Universiteit Ziekenhuis Amsterdam (Free University Hospital). We went there Tuesday. Three Eye specialists examined and their conclusion was that the eye itself looked good (Iris - retina). For eye development reasons they recommended direct action and we were sent to the plastic surgery dep. Two plastic surgeons looked at her, they contacted a specialist in eyelid correction with great experience in this field and together with a couple of eye specialists and an anaestologist. The result of their meeting was an concrete conclusion "operation asap". It is scheduled for May 12. Both parents and grandparents are very happy with the way the diagnoses/conclusion/decission was made. Í keep you all informed. Maybee I can post some pictures in the album so we all can see the development but I have to find out how this works.

Best Regards,

Dolph Heideman

[Guest guest]

A couple of docters/specialists adviced for a frontalissuspensie.

With this operation some small cuts are made in the upper eyelid and

three in the forehead. Two of them just above the eyebrow and one in

the middle. A small piece of material is brought in between the

tissues in the eyelid and the forehad muscle. The material used by

children under the age of 4 is silliconrubber. The advantage of this

method is that the operation is a minor surgical operation (one day

in hospital) and it can be undone quit easily if in a later age the

sillicon can be replaced by a piece of her own string. The sutures

will be removed in 5 days. Now can use her eyes and see without

moving her head so strongly backwards and she can start practising in

moving her eyelids up and down. In the website of the Rotterdam

Eyehospital there is a drawing how it is done. Unfortunately the text

is in Dutch but I gladly translate it into English if necessary.

http://www.schisis.nl/ogen/oculopl_bestanden/ptocon.htm

Regards,

Dolph Heideman

> Hi, So is only a few weeks old, why have they decided to do

surgery SO

> young? I remember when Ethan was only a few weeks old his eyes were

very

> closed for the the 1st few weeks, but thats becasue he was still so

new, he

> learned to use his forehead to open his eyes wider, and he looks

pretty good

> now, and the Dr has suggested surgery when he is about 4, better

results if

> the child is older, Why have they determined doing surgery when

she is only

> 1 month old??? Seems so little? I would think they would atleast

give her a

> couple months to see what her eyes do then as she will be a little

older and

> have more control of opening her eyes.

>

> -- blepharophimosis Things are going very fast now...!

>

> Hello Group,

>

> Our granddaughter was born on April 2 this year, she has BPES. The

> familydoctor sent them ( and her parents) to the local Hospital

here in

> Purmerend (80.000 inh.) - The Netherlands. Two eye-specialists

looked at

> her and concluded that this was far above their expertise and they

sent them

> to Vrije Universiteit Ziekenhuis Amsterdam (Free University

Hospital). We

> went there Tuesday. Three Eye specialists examined and their

conclusion

> was that the eye itself looked good (Iris - retina). For eye

development

> reasons they recommended direct action and we were sent to the

plastic

> surgery dep. Two plastic surgeons looked at her, they contacted a

specialist

> in eyelid correction with great experience in this field and

together with a

> couple of eye specialists and an anaestologist. The result of their

meeting

> was an concrete conclusion " operation asap " . It is scheduled for

May 12.

> Both parents and grandparents are very happy with the way the

> diagnoses/conclusion/decission was made. Í keep you all

informed.

Maybee I

> can post some pictures in the album so we all can see the

development

> but I have to find out how this works.

> Best Regards,

> Dolph Heideman

>

>

>

[Guest guest]

Adolph Johan Heideman wrote:

> A couple of docters/specialists adviced for a frontalissuspensie.

> With this operation some small cuts are made in the upper eyelid and

> three in the forehead. Two of them just above the eyebrow and one in

> the middle. A small piece of material is brought in between the

> tissues in the eyelid and the forehad muscle. The material used by

> children under the age of 4 is silliconrubber. The advantage of this

> method is that the operation is a minor surgical operation (one day

> in hospital) and it can be undone quit easily if in a later age the

> sillicon can be replaced by a piece of her own string.

Great new. She'll be a whole new kid.

That's the standard repair for ptosis. The later 'string' would be facia

(or fascia) lata, which is the slippery, tough, rubbery stuff that

surrounds the thigh muscle, keeping it in shape and allowing it to slip

against adjacent muscles.

One day in hospital is pretty amazing, but also standard these days.

When I had that done (in the '60s) I was in hospital for a week or more.

Rob