Re: Advice re Surgery options

[Guest guest]

i say you need to do what is best for your child and in the end you will, our situation is like many you will find, our son was 5-6 weeks old when he had his first surgery...(see photos under lynden) his eyelids were really obstructing his vision and could barely see... for us it was almost mandatory if we wanted him to have "normal" vision... that is pretty much my advice in that if it affects the vision then usually surgery is best and your doctor will let you know that , if it does not affect the vision then alot of families / doctors opt to wait till the child is older. good luck and i am sure you will receive alot of advice.... there are many people on here that have various stories and experiences.....

tonikka

edmonton alberta canada

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of drtfortuneSent: November 23, 2006 5:27 PMblepharophimosis Subject: blepharophimosis Advice re Surgery options

Our 3 month old son, Tyler, was recently diagnosed with BPES. We have been referred to a surgeon who has recommended the following: 1. At 10 months - insertion of silastic bands to lift lids and temporarily correct ptosis, 2. At approx 3/4 years - surgery to correct the blepharophimosis and epicanthus inversus, and 3. At approx 4/5 years - permanent correction of ptosis.I have been reading through the group messages and see that whilst surgical intervention seems to be the most common action taken by parents / patients, there are a number of parents who have decided against surgery, for various reasons. Although we plan to seriously consider any recommendations made by our surgeon and health professionals, we would great appreciate other families opinions on whether surgery was the best way to go. Like all parents, we think our son is perfect and beautiful just as he is, but we want to ensure that we are providing what is best for him.As far as we know to date, Tyler's development and vision have not been impaired so I question whether the first surgery (silastic bands for lid lift) is completely necessary or if we should perhaps consider waiting for the permanent lift, for the purpose of minimising his discomfort (and ours!).We have been advised that the temporary lift is usually recommended so that the child is not lifting their chin and tilting their head back to see. Such lifting, we are told, can cause delayed development with crawling and walking and cause problems with the child's neck and shoulders. I am interested to see that I have not seen any mention of this problem posted on this forum from the parents who decided against surgery. Is this a real problem for most BPES babies / toddlers or not?We realise every child and every experience is different but some advice from those who have been there would be fantastic.Also, if there are any other families out there from Australia we would love to hear from you as we have not yet had contact from any other parents or children.Robyn FortunePerth, Australia

[Guest guest]

G'day Robyn,

> Also, if there are any other families out there from Australia we would love

to hear from

> you

There are a number of us here in Oz. I'm in Syd-er-ney; there are others

here, plus some in Melbourne, a few in Brisbane, Parkes, Canberra,

Adelaide. You're the first Perthite I've seen, I think?

Welcome.

The forum has a database attached that folks can enter their details

into, such as location, etc. From time to time Shireen (in sunny

England) posts summaries by country. Here's the one for Oz/NZ posted in

July:

blepharophimosis/message/4479

Of course, this is just showing those in the forum who have entered

their details. There may be any number of watchers/lurkers who live

nearby that we don't know about.

> as we have not yet had contact from any other parents or children.

Not surprising. BPES enhancement is sufficiently rare that even most

ophthalmic surgeons never see a case in their lives, so finding others,

except through fora like this, is almost unheard-of.

> Robyn Fortune

> Perth, Australia

Rob

Sinny