--- In GOLDENHAR@yahoogroups.com, "preciouspetle"
<preciouspetle@y...> wrote:
>
i learned that there were two groups on goldenhar syndrome on here!
my mom was telling me how wonderful this group was and i was tellin
her things and we learned that there were two. YOu must be approved
for the other group but that shouldnt be a problem since u have a gs
child. the link
ishttp://health.groups.yahoo.com/group/goldenharsyndrome/ Please try
to join this group i think it will help you out a lot!
> Hi, I have a 3yr old daughter with GS (Affects left side of face,
> neck and left kidney) She's only had two minor ops (to correct her
> cleft lip)and we've just been refered to birmingham childrens hosp
> (uk). who are talking about a BAHA and Rib graft in the near
future.
> though reciently we've been contacted by a more local centre who
say
> they can do it better and sooner.
>
> Problem is I'm not sure what all this involves let alone which
group
> should allow to treat my daughter!
>
> The Doctors seem very good at giving you information that is either
> above your head or not in debth enough and also seem to leave us
> with a Vague Idea that there planing to do something, somewhen and
> they'll tell us more later.
>
> I recon I'm not asking the right questions. But I'm not naturally
> assertive so I find it difficult to ask any at all.
>
> Anyone else have this prob?
>
> P.P