Re: Naomi C.'s consultation with Mr Collin

[Guest guest]

Hi ,

It was also such a pleasure for us to meet you, Steve, Kirsten and . You

are a really

cool family! Thank you for saying such kind things about Naomi. Ern and I left

that

meeting feeling so happy, reassured and full of hope. Thank you Shireen for

organising it

and thank you to all the people who came along. You are indeed like family to

us.

Thanks for sharing what you've learnt from Mr Collin. It is interesting to note

that Kirsten

and Holly's medical management by Mr Collin includes medial canthoplasty,

whereas

Naomi's does not. We are truly unsure why that is, only to guess that his

decision may be

partly dependant on facial features of different ethnic groups.

You are so right to say that this highlights the importance and significance of

individualised assesment and management.

Do keep us informed of Kirsten's progress. We are thinking of you and always

wishing you

all the very best.

Hugs to all

> >

> > Hi All,

> >

> > It's been a while since I posted, but I thought you guys might

> want to

> > hear about how Naomi's appointment with Mr Collin went on Dec 20,

> 2005.

> >

> > A brief summary on Naomi (see her pictures at Naomi C.). Naomi was

> > diagnosed to have BPES when she was 3 months old (the only one in

> our

> > extended families with the condition). At diagnosis, her

> paediatric

> > ophthalmologist suggested we tape up her lids with surgical tape

> > whenever she's awake(e.g., with Steristrips, Micropore and now

> > Blenderm) until she is physically tall enough for definitive

> surgery

> > to be done properly. We've been religiously doing that for almost

> 3

> > years now, and her vision has remained relatively stable whenever

> > she's assessed at her 4-6 monthly check-ups. Apart from mild

> > astigmatism and hyperopia (she has been wearing glasses since last

> May

> > to counter these), she has no amblyopia/lazy eye and does not need

> to

> > tilt her head back to see. Her development in all areas has been

> > appropriate for her age.

> >

> > Naomi's oculoplastic surgeon here in Singapore is happy to wait

> until

> > her legs (Naomi's, not the surgeon's) are long enough before

> > proceeding to frontalis sling/brow lift surgery (since she's

> rather

> > small for her age, the surgeon estimates that surgery may take

> place

> > anytime after the next 6 to 12 months).

> >

> > We decided to see Mr Collin in London for an opinion. We weren't

> too

> > sure about whether Naomi was getting the most appropriate

> treatment in

> > Singapore so we went to consult Mr Collin (based on the good

> things

> > we've heard about him from this group).

> >

> > In short, Mr Collin's opinion on Naomi is as follows:

> >

> > (1) the lid tapes have been effective in allowing Naomi's vision

> to

> > develop properly - he said that they served the same function as

> > temporary slings;

> >

> > (2) he AGREED with our surgeon's view to wait until Naomi is tall

> > enough before proceeding with frontalis sling surgery using her

> own

> > tensor fascia lata (TFL) tissue to graft (the tissue will only be

> > harvested from one leg, not both!) - he estimates timing of

> surgery to

> > be about when Naomi's 4.5 years old;

> >

> > (3) he personally prefers to use TFL grafts instead of silicone

> rods

> > as he said that the complication rate with prosthetics is

> RELATIVELY

> > higher;

> >

> > (4) he would NOT proceed to do a medial canthoplasty while Naomi's

> > still a child - he'd rather wait until her facial features

> stabilize

> > when she's in her teens before re-assessing the need and extent

> for

> > canthoplasty (we wonder if this is because we are ethnically

> Chinese

> > and Naomi's features after frontalis sling surgery alone would

> still

> > appear " normal " );

> >

> > (5) he feels that canthoplasty, even in the best of hands, is a

> > procedure that may result in varying degrees of scarring.

> >

> > We came away 150GBP poorer but very much reassured. We hadn't come

> to

> > the UK for surgery but for an opinion on whether the expertise in

> > Singapore is up to scratch for the management of BPES. Mr Collin

> > reassured us that Naomi's surgeon is well qualified and vastly

> > experienced for the job - she had been his trainee in the UK

> several

> > years ago!

> >

> > That's that for now.

> >

> > We'd be happy to elaborate on lid-taping if anyone's interested.

> >

> >

> >

> > Cheers,

> > Ern (and )

> >

>

[Guest guest]

Thank you for sharing the details of Naomi's appt. It

is very helpful for me to hear other's parent's

experiences as it gives me a greater knowledge of what

to ask our doctors the next time we go in. Best

wishes for Naomi!

April

> > >

> > > Hi All,

> > >

> > > It's been a while since I posted, but I thought

> you guys might

> > want to

> > > hear about how Naomi's appointment with Mr

> Collin went on Dec 20,

> > 2005.

> > >

> > > A brief summary on Naomi (see her pictures at

> Naomi C.). Naomi was

> > > diagnosed to have BPES when she was 3 months old

> (the only one in

> > our

> > > extended families with the condition). At

> diagnosis, her

> > paediatric

> > > ophthalmologist suggested we tape up her lids

> with surgical tape

> > > whenever she's awake(e.g., with Steristrips,

> Micropore and now

> > > Blenderm) until she is physically tall enough

> for definitive

> > surgery

> > > to be done properly. We've been religiously

> doing that for almost

> > 3

> > > years now, and her vision has remained

> relatively stable whenever

> > > she's assessed at her 4-6 monthly check-ups.

> Apart from mild

> > > astigmatism and hyperopia (she has been wearing

> glasses since last

> > May

> > > to counter these), she has no amblyopia/lazy eye

> and does not need

> > to

> > > tilt her head back to see. Her development in

> all areas has been

> > > appropriate for her age.

> > >

> > > Naomi's oculoplastic surgeon here in Singapore

> is happy to wait

> > until

> > > her legs (Naomi's, not the surgeon's) are long

> enough before

> > > proceeding to frontalis sling/brow lift surgery

> (since she's

> > rather

> > > small for her age, the surgeon estimates that

> surgery may take

> > place

> > > anytime after the next 6 to 12 months).

> > >

> > > We decided to see Mr Collin in London for an

> opinion. We weren't

> > too

> > > sure about whether Naomi was getting the most

> appropriate

> > treatment in

> > > Singapore so we went to consult Mr Collin (based

> on the good

> > things

> > > we've heard about him from this group).

> > >

> > > In short, Mr Collin's opinion on Naomi is as

> follows:

> > >

> > > (1) the lid tapes have been effective in

> allowing Naomi's vision

> > to

> > > develop properly - he said that they served the

> same function as

> > > temporary slings;

> > >

> > > (2) he AGREED with our surgeon's view to wait

> until Naomi is tall

> > > enough before proceeding with frontalis sling

> surgery using her

> > own

> > > tensor fascia lata (TFL) tissue to graft (the

> tissue will only be

> > > harvested from one leg, not both!) - he

> estimates timing of

> > surgery to

> > > be about when Naomi's 4.5 years old;

> > >

> > > (3) he personally prefers to use TFL grafts

> instead of silicone

> > rods

> > > as he said that the complication rate with

> prosthetics is

> > RELATIVELY

> > > higher;

> > >

> > > (4) he would NOT proceed to do a medial

> canthoplasty while Naomi's

> > > still a child - he'd rather wait until her

> facial features

> > stabilize

> > > when she's in her teens before re-assessing the

> need and extent

> > for

> > > canthoplasty (we wonder if this is because we

> are ethnically

> > Chinese

> > > and Naomi's features after frontalis sling

> surgery alone would

> > still

> > > appear " normal " );

> > >

> > > (5) he feels that canthoplasty, even in the best

> of hands, is a

> > > procedure that may result in varying degrees of

> scarring.

> > >

> > > We came away 150GBP poorer but very much

> reassured. We hadn't come

> > to

> > > the UK for surgery but for an opinion on whether

> the expertise in

> > > Singapore is up to scratch for the management of

> BPES.

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