Hi Fay, re the testing - it is very important to note that there is
no test for Stickler syndrome. They can test to see if a couple of
the known mutations that cause Sticklers are present, but they know
that there are many many more mutations that have not been identified
yet. There is a diagnostic criteria that has been produced, not sure
if it has been actually published yet, this is by far the best and
easiest way to determine if it is Sticklers. It goes on a point
system and gives a certain number of points for each symptom and you
have to end up with a certain number of points in each section of the
criteria. Also, symptoms can vary within families, there doesn't
seem to be symptoms that "run" in a family - perhaps only by
coincidence.

I don't know where you are, but there is a conference in San Jose
July 11-13. it is hosted by Stickler Involved People
(www.sticklers.org) If you can get to the conference it is well
worth going. Registration is a minimal amount and the information
you gain is invaluable.

As to the mood/depression q - I have not heard of that as a symptom,
but it would not surprise me to discover that many "sticky's" have
this. I know my son has this for sure. He's gone through alot in
the past 4 years (lost sight, hearing and mobility) and cannot take
the ridicule from kids and teachers (!!!can you imagine!!!) anymore.
We have him in therapy and are trying to get into a "cognitive
behaviour therapy" program at our local children's hospital. We are
pulling him out of school and will homeschool him for at least a
couple years. He is such a wreck right now that even changing
schools will not help matters I think.

contact Pat at sticklers.org for info pamphlets you can take to your
doctor. She is a wonderful lady and very helpful.

I hope to hear from you soon, take care

Barb

--- In sticklersyndrome@yahoogroups.com, "faybaby24202"
<fay.lesley.mcleod@b...> wrote:
> Hi there, I have been a member of this group for a while now but
> haven't actually posted a message. Both myself and my son were born
> with Pierre Robin Syndrome. I was told all ym life (up until I had
> my son) that it was isolated pierre robin syndrome. however when my
> son came along also with pierre robin syndrome, the geneticists got
> involved. Although they ahve done lots of testing, all tests came
> back negative. However the geneticist beleives that we may ahve
> partial sticklers syndrome. He thinks that we'll need to wait and
> see what happens in future generations, what symptoms will manifest
> etc.
> I have quite a lot of features of sticklers, pierre robin syndrome,
> facial abnormalities, hearing loss to name a few and Brendan has
> pierre robin syndrome, small toe nails, tapered fingers, crinkled
> tops of his ears for eg.
> The question I need to ask is that I'm sure I read somewhere that
> mood disorders/depression etc can be a symptom of sticklers too.
But
> I can't for the life of me find this info again. Does anyone know
if
> I'm right in thinking I have read this, and where can I fid the
> info.
> thanks
> Fay
> xxx