Re: Aussie Kid

[Guest guest]

mark_glasheen wrote:

> Hi everyone,

> I'm Fiona and my son has BPES, we're from NSW Australia.

Ah. I thought you'd appear sooner or later. In Parkes, as I recall?

Welcome, cobber.

> We travel monthly to a paediatric opthalmoligist,and 's doing

> every thing he should be doing for a 6 month old.(actually even more,

But of course. That's why I like to use the term " BPEI-enhanced " !

> The last time we went to the eye Doc he said it was time to operate!.

> So now we are so not prepared. Originally he thought we wouldn't do

> any surgery before 12mths,unless his condition as interfering in his

> development.Well even though is going so well and is'nt

> delayed in anyway he's (the eye doc) concerned about 's head

> posture and the chance of his vision deteroirating.

Did the doc say what he/she wanted to do, specifically, at this stage?

Probably an initial ptosis repair?

> This was all great untill our Paediatrian said he didn't think Dr

> was taking any new patients due to the fact he was soon

> to retire.That soon wiped the smile off my face.Have you heard

> anything Rob, is this true?

I'm not sure. I heard it from Kristie (!), but haven't seen for

either my son or myself for several years. Very possible, since is

getting on a bit (he's probably at least 60). One way to find out for

sure: call his office and ask - worth a try.

> We have been to see a surgeon at P of W Hospital Sydney, and I'm

> quite happy for him to do the first surgery, being the ptosis which

> seems to be fairly commom (for an eye surgon anyway)but anything

> after that I,m really looking for a surgeon with experience in BPES

> pateints.

>

> So Rob, Kristie, Craig or anyone that knows of an expeienced surgeon

> in Australia thats not retiring too old or dead I would love to hear

> from you.

We found Brett O'Donnell, who has had experience with BPEI-related work

and published a number of journal articles while he was at Moorfields

Eye Hospital in London. Lots of paediatric experience. Did an effective

job on so it's worth interviewing him. Office is in St Leonards,

so it's easy to get to. Age-wise, he's probably got about 20-25 years or

so left in him, I'd guess.

> Thankyou, I have a million more questions but this is too long

> already.

Let me know when you're in Syd-er-ney and we can do lunch or coffee or

whatever.

Rob