Francesco: Mr Collin

[Guest guest]

Hi Francesco

Good luck for Caterina's appointment in Dec. Many members of this

group are patient's of Mr Collin and can also give you their input.

From my experience, my daughter had her lid lift done when she was 2

years and 4 months. She had the surgery at lunch time and would have

been allowed to go home the same day. But because we didn't live

near the hospital we stayed for one night and went home the next

morning.

I found being at Moorfields really interesting because it made me

grateful that Kirsten had her sight. So many of the kids in the ward

were being treated for glaucoma or other eye conditions that

resulted in blindness and I clearly remember thinking how lucky we

were. One mum was there with her nine month old son who was having

an emergency operation for the 4th time and who would likely end up

blind. She appeared to be so calm and I was wondering how she would

cope in the future. It was a very humbling experience.

Kirsten was in theatre for about an hour. She came out crying but

settled down quickly once I picked her up. She looked strange as her

eyes were very open but they weren't swollen or bruised and she

didn't have bandages on. When she was in the ward she kept touching

things as though she was seeing them for the first time and I

couldn't stop staring at her because she looked so different.

Paracetamol syrup was sufficient to control any pain.

The most traumatic thing for her and I was putting in eye ointment

every couple of hours especially at night but by the 3rd day she was

used to it. She was quite photophobic and didn't like the sunlight

much. After 2 days or so she was back to her normal self and she

went back to nursery school after 1 month. We stopped using eye

oitment after about 2 months but I would put some in at night if I

felt it was necessary.

It has taken 6 months to really appreciate the final result as her

eyes continued to settle into their new shape. I am thrilled with

the result and have no regrets. Her pictures are under " Kirsten

Parsons " .

Again, all the best for Caterina's surgery and I hope other members

will give you an account of their experiences.

Kindest regards

P

> > > >

> > > > Hi,

> > > >

> > > > My name is Donna and I have a 15 month old boy, who

has

> > > BPES.

> > > > is a beautiful, happy baby who we love very much and

he

> > > seems to

> > > > have a knack for making everyone who meets him fall in love

> with

> > > him.

> > > > He has a 4 year old sister and they adore each other.

> > > >

> > > > He is the first in the family with BPES, so until he was

born

> we

> > > had

> > > > never heard of it. It is nice to read messages and

hopefully

> > > learn

> > > > from everyones experiences.

> > > >

> > > > has only recently started crawling and standing and we

> > have

> > > been

> > > > told by the drs. that this is normal for someone with BPES

as

> > > mobility

> > > > can be late to develop - did anyone else experience this?

> > > Although

> > > > now he is coming on leaps and bounds.

> > > >

> > > > It has taken time for me to pluck up the courage to join the

> > group

> > > but

> > > > I guess that I need to know more about the surgery he will

> face

> > > when

> > > > he is older.

> > > >

> > > > We live in the UK and would be interested to hear from

others

> in

> > > the UK

> > > > so we can share information on doctors etc.

> > > >

> > > > Best Wishes to you all

> > > >

> > >

> >

>

>

>

>

>

>

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