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Update on Alyssa

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Hi everyone and to all the new members. For some reason we were locked out of , and only just got back again so have missed messages for the last few weeks.

For those who aren't familiar, Alyssa is our 19 month old with BPES and Duanes Syndromes. The first in our family to have BPES.

We had a consultation with Alyssa's surgeon today and he has scheduled surgery to do her epicanthal folds next week (the 24th June) He is going to use the "Roveda procedure". We would love to hear from anyone with info about, or has had this particular procedure done? We are concerned about the amount of different procedures for the same effect, and would like to know if this is one of the widely used methods.

Afterwards should we expect days of screaming from the pain? We are also concerned that she might rub or fall and pull all the stitches etc. We've read your posts regarding this and understand that little ones very quickly find out it is too sore to touch and this deters them from rubbing their eyes, but has anyone experienced the worst and had to go back to surgery?

We are (as you can tell) anxious about her first surgery. Your replies are much appreciated. thanks.

and Rob

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