New member, daughter of 7 months with BPES

[Guest guest]

Hi to everyone,

I have just joined, my daughter who is now 7 months, has BPES. It is

the first case in our family, so I have very little information about

this condition. She has been seen at Ste-e hospital, in

Montreal, Canada. Since her birth her eyesight has been evaluated

twice and the results were good. She has also been seen by the

surgeon who has not given me a specific age for the corrective

surgery, although he usually operates between the ages of 2 and 5. I

know that some have been operated at a much earlier age (before the

age of one). I am afraid that waiting to long will affect her

eyesight, although she will be monitered every 3 months. Can anyone

tell me about their experience, if operating earlier gives better

results, or does it mean that she will have to go through more than

one surgery. Thank you for your help!

[Guest guest]

Hi Micheline,

My name is and my son and I, both have BPES. We live near North Bay Ontario and see a Dr. Pashby in Toronto, who has lots of experience with BPES. He has always said to me that the older the child the better the results will be, so unless your child's pupils are covered and they have to tilt their head it is better to wait to do surgery.

If you would like to talk, you can email me directly with your number and I can give you a call.

Take care,

Ontario, Canada

blepharophimosis New member, daughter of 7 months with BPES

Hi to everyone,I have just joined, my daughter who is now 7 months, has BPES. It is the first case in our family, so I have very little information about this condition. She has been seen at Ste-e hospital, in Montreal, Canada. Since her birth her eyesight has been evaluated twice and the results were good. She has also been seen by the surgeon who has not given me a specific age for the corrective surgery, although he usually operates between the ages of 2 and 5. I know that some have been operated at a much earlier age (before the age of one). I am afraid that waiting to long will affect her eyesight, although she will be monitered every 3 months. Can anyone tell me about their experience, if operating earlier gives better results, or does it mean that she will have to go through more than one surgery. Thank you for your help!

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