Aussie Kid

[Guest guest]

Hi everyone,

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

is the first in our family to have this condition, we have two

other boys 5 and nearly 3. is now 6 mths, he

was diagnosed at 4 weeks and seems to be moderatly effected with no

other problems as yet.

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

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

he's already crawling along on his tummy,which really surprised us

when all he can see is how dirty my floor is!)

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.

My sister- in -law Kristie(who has been on this sight for me,when

was first diagnosed) told me about a man Rob and his

son both have BPES after telling me a bit about them I was so

relieved, I thought you bloody beauty, this bright intelligent

knowledgable man seems to know exactly what he's talking about and

has done all the hard work for me finding a good surgeon. (thats a

fare wrap is'nt it).

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?

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.

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

already.

Bye for now Fiona and .