Hi Maxine/Susan
I'm guilty of being on here from the beginning and then going very
quiet.
I think I just got to a point with searching where Dr cole said yes
to sotos-like and I had to then start concentrating on school
stuff/therapy etc. It wasn't the 'relief' diagnosis I was looking for
to be honest - far from it, but it helped me argue his case with the
authorities and that was the stage I was at/have been at.   I am in a
situation where whilst I use Sotos-like to the LEA/medics etc and to
argue for support and therapies, in my heart I wonder still what it
really is IYKWIM, but I have just been concentrating on the day to
day and let the medical search slide in order to be able to do that
for Finn I guess.  Sorry for not posting more often :)  I vow to do
more :)
I post a lot on a group in the UK called Special Kids in the UK, but
I also read most of the posts on the sotos group and here too as the
group in the UK is for all/any children with any special need and is
not specific to Overgrowth.  However I have found it extremely
helpful with stuff that is UK specific especially fighting for help
at school, statementing, seating, piedros etc and their knowledge
about various medics etc.  The downside is that there is only one
other person with a child with Sotos on the group and she never
posts.  And when you read the posts on the sotos group or here, you
just know that everyone 'knows' what you mean instinctively in a btdt
kind of way (although everyone is very very supportive anyway on the
UK group).
Anyway, just thought I'd say hi and that I will try and post more :)
Miranda
--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, "susan smith"
<shannick@...> wrote:
>
> Hi Maxine
> I'm on this site too!! It used to be really good but then went very
quiet.
> However there have been a couple of new people posting recently so
lets hope
> we can get it going again.  I think it is so important for all of
us without
> a definite diagnosis to be able to relate to each other.
>
> Susan UK
>
>
> ----- Original Message -----
> From: "mxnpowis" <mxnpowis@...>
> To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
> Sent: Friday, February 10, 2006 8:42 PM
> Subject: [UndiagnosedOvergrowthSyndromes] new to group
>
>
> > hi,i thought id join this group as my son michael has an
undiagnosed
> > overgrowth syndrome,he was tested 4 sotos but it was
negative,michaels
> > 18 months old but he started puberty at 8 months, trying to find
some
> > answers but its so hard!!! i hope to make friends with others in
the
> > same situation,were going through a hard time right now michael
> > suffers from severe reflu and also aspirates fluid into his lungs
he
> > has so many chest infections because of it its unreal,were
fighting
> > with the docs to sort it out,but they are useless,they dont even
know
> > my son!!! sorry ot vent ,just frustrated,hello to you
all,mxnpowis,uk
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
> >
>

---

YAHOO! GROUPS LINKS

•  Visit your group "UndiagnosedOvergrowthSyndromes" on the web.
   
•  To unsubscribe from this group, send an email to:
   UndiagnosedOvergrowthSyndromes-unsubscribe@yahoogroups.com
   
•  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

---