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Reply | Forward Message #512 of 809 |
Re: [UndiagnosedOvergrowthSyndromes] hi

hi donna thank you for your email it is worring and hard for both, its so not fair. people think my daughter is around 10 to 12 years as she is the same  height now as my other daughter was at 12years old my other daughter is 21ys now and is 5.4 in height. please keep in touch  ellie chester uk

dlp <leap@...> wrote:
Hi ellie - my little son is nearly 6 and is your daughter's height, and 32
kgs (not sure what in stones). The hardest part for me (and him of course)
is other peoples' expectations of his behaviour. He looks just like an 8
year old. He is being checked out next month with endocrine tests, just in
case there's some medical thing going on. It's worrying isn't it?
I'm in Australia.
Donna.

----- Original Message -----
From: "ellie_rbrts" <ellie_rbrts@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Tuesday, February 07, 2006 7:31 AM
Subject: [UndiagnosedOvergrowthSyndromes] hi


> hello all my name is ellie and i have a little girl who is 6years old
> and has undiagnosed overgroth syndrome she is 137cm tall and weighs 7
> stone. We live in the uk and very little is known about UOS is there
> anyone who could help or as anyone got a or know of a child with the
> same thank you ellie
>
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> Yahoo! Groups Links
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Wed Feb 8, 2006 1:58 pm

ellie_rbrts
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Message #512 of 809 |
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my name is jan ferguson and my son jeremy was dx with soto for 2 years and now that they have done the gene test it is undx overgrowth syndrome. yesterday they...
JAN
jan4bri
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Dec 18, 2003
7:52 pm

Hi Jan does this mean that because the NSD1 test came back neg they are now saying he does not havbe Sotos? Because I understood that this test was not...
finnedward1998
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Dec 20, 2003
9:38 am

hello all my name is ellie and i have a little girl who is 6years old and has undiagnosed overgroth syndrome she is 137cm tall and weighs 7 stone. We live in...
ellie_rbrts
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Feb 6, 2006
8:31 pm

Hi ellie - my little son is nearly 6 and is your daughter's height, and 32 kgs (not sure what in stones). The hardest part for me (and him of course) is other...
dlp
donnaleapau
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Feb 7, 2006
2:10 am

hi donna thank you for your email it is worring and hard for both, its so not fair. people think my daughter is around 10 to 12 years as she is the same...
ellie roberts
ellie_rbrts
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Feb 8, 2006
2:00 pm

Hi Ellie I am also in the UK and my daughter Shannon is 8 and has a diagnosis of Unrecognised Overgrowth Syndrome and Asperger Syndrome. It is so frustrating...
susan smith
shannick145
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Feb 7, 2006
11:30 am
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