SV: long term effect of compensations

August 16, 2006

Hi Jen,

I have a boy in almost 5

month, and I share your thoughts and problems. But I think I read about a man

who got his operation as adult. His whole life he had tilted his head, but

after surgery he had no problems. So we just have to pray that the same will

happen to our boys. We are promised surgery about 3 years from now. In the

beginning I felt really sad and felt that everybody stared at my baby, but I

think I got over it. I think he is so beatifull and he is just a very happy boy

who gives his mother lots of smiles. Couldn’t love him more if he did not

have BPES.

All the best to you and your

Braydon.

Lise, Sylvesters mom.

[mailto:blepharophimosis ] På

vegne af MacKinnon

Sendt: 15. august 2006 19:26

Til:

Emne: blepharophimosis long term

effect of compensations

Hi, I am new to this site as my 2 month old son,

Braydon, was just

diagnosed with BPES today. They say he won't need surgery until he is

4 or 5, and that it's good that he's compensating by tilting his head

backwards to see better. I'm happy that he's able to compensate but

concerned that 4 or 5 years of holding his head tilted back will cause

other problems. Can anyone comment on this for me? And after having

surgery, would the backwards head tilting correct itself or would it

remain since it would be the only way he's ever held his head?

Thanks in advance!

Jen

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