Hi Deb, I have a 12 year old son that has gone through the same eye
problems as your daughter. Ty's had 2 detachments in his left eye.
After the first his sight returned really well, but not after the
second. Now (it's been 5 years) he can see light, colours and
movement, but no detail at all. After his first detachment, our
retina surgeon recommended preventative surgery for Ty. We went
ahead and had a scleral buckle put on his good eye and also some
cryosurgery to reinforce some weak spots on the retina. Happily, 5
years later, though he sees the floaters and flashes, his retina has
remained firmly in place and his vision is stable in that eye. Ask
your doctor about preventative surgery - if he won't do it, find one
that will. I don't know where you are, but if you contact Pat at the
Stickler group (www.sticklers.org) she may be able to put you in
contact with someone in your region.

In your previous message you mentioned about the conference - we are
going, (we've only missed one) If there is any possibility at all of
you or any of your family going, it is so worth it! I'm not sure yet
where the next one will be, I think we're voting on it at the conf.
(poss. either Denver or Orlando)

The info out there about Stickler's and especially the eye issues
certainly is scary, but by researching it, finding out as much as you
can, you are ensuring that you are ready to be able to make an
informed decision and will be able to advocate for your family in
their best interests. Unfortunately many doctors are unfamiliar with
Sticklers, or have very outdated information. It's not their fault,
there's so many different disorders out there that there is no way
they could possibly be current in everything, especially something
like Sticklers. If you can find a doctor that is willing to work
with and listen to you and to learn, then that is half the battle.
That's why it is so important for people with Stickler's to do their
own research and then be able to discuss it openly with their doctor
and not rely solely upon the doctor's personal experience with this
type of disorder.

Well, now that I've rambled on forever about this, I hope that things
go well for your daughter, and your family. Take care,

Barb