susan ,your so right,i think when its still hanging over your head so to speak,it can be a real worry,i must admit i think about it all the time,i hope that one day we all get the answers we are looking for,i think i remember you saying your child was part of the overgrowth study as well,am i right? i posted michaels picture on the sotos site ,check it out if you can,can you put pictures on here,ill have to find out,michaels playing up big time right now,oh well better go,take care and keep in touch,maxine

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
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> Yahoo! Groups Links
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