miranda,i agree we should all post maybe once a week,one to support each other,and two to keep it going,can i ask whats your sons story if you dont mind me asking? thanks maxine

finnedward98 <finnedward98@...> wrote:

I think it is important that this site is here for those people whose
children have an undiagnosed overgrowth syndrome.  However many of us
(lol I haven't posted anywhere for a long time) seem to post also on
the Sotos site.  I think that is because actually a lot of our
children have really similar symptoms in common regardless of their
dx and there is a wealth of information and people on the sotos site
which I know I draw on despite Finn testing neg for nsd1 change.
Finn is so similar in every way to the children on the group
(although of course all the kids are different in their own ways),
that I always know if I am looking for something someone there will
have btdt.  However as I say, making sure that people who come new to
this site know we are all still here and reading too is important. 
Maybe we should all make sure we post intermittently even if it is
once per week, just to let others who find us know we are still
active?
Miranda

--- In UndiagnosedOvergrowthSyndromes@yahoogroups.com, maxine powis
<mxnpowis@...> wrote:
>
> im sure they will,its too good a thing to let slide! we all get
really busy sometimes,i never seem to have enough hours in my
world!!! maxine
>
> Hair Doctor <hairdoctor@...> wrote:           This site is in the
links section of the Sotos site, so if anyone were looking hard
enough, they'd find it.   There are quite a few members here, but I
guess they are real busy with their special kids these days.  Maybe
one day they'll pop back in and see these posts!
>   Sarah
>   
>   My Yahoo 360 Page
> http://360.yahoo.com/waytoopoortobeme
>     ----- Original Message -----
>   From: susan smith
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 6:04 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
>   Hi again Maxine
>   I wonder whether it would be a good idea to mention this site on
the Sotos one because I think there are several on there without a
diagnosis.  That is how I found out about this site in the first
place because someone had "advertised" it.  I remember how pleased I
was to find it as it was such an active site about a year ago.
>   
>   Susan
>     ----- Original Message -----
>   From: maxine powis
>   To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
>   Sent: Friday, March 31, 2006 10:05 AM
>   Subject: Re: [UndiagnosedOvergrowthSyndromes] To Maxine
>  
>
> thanks ,i agree about keeping this site active,but what can we do
in order to get people in our position to use it,it would be great if
more people used it ,it could benefit us all,its not really used
much ,maybe people arent aware of it? take care ,maxine xx
>
> shannick145 <shannick@...> wrote:     Hi Maxine
>   I thought I would reply to your post on this site, to keep it
active.  It would be a pity if a new person coming on here was put
off because of lack of activity and then didn't post.  They could
just be the person you or I need in helping our children get a
diagnosis.
>   Re the blood testing, Shannon's dad and I both had to give DNA
samples through blood which was done at the hospital at the request
of our geneticist.  I could imagine a GP not being able to do it
because I would imagine it would be far more involved than an
ordinary blood test.  We didn't have to have photos taken but Shannon
had lots.  We had to give a lot of information about ourselves though.
>   I was so pleased to hear that Michael is walking and has started
to use words.  You must be so thrilled.
>   Good to hear from you
>   Susan UK
>   
>
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