That's a great idea Miranda. I agree most post on the Sotos site (my
daughter has Sotos), but I started this site anyway, because there may be
those who never visited that site who don't bother because Sotos has been
ruled out. Maybe if they see this site they will know they are welcome
there anyway.
Sarah

My Yahoo 360 Page
http://360.yahoo.com/waytoopoortobeme
----- Original Message -----
From: "finnedward98" <finnedward98@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Thursday, April 06, 2006 6:45 PM
Subject: [UndiagnosedOvergrowthSyndromes] Re: To Maxine


>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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