Hi, I just joined today. When my youngest son Liam was born on Sept 8 this year, I was told he might have Beckwith-Weidemann Syndrome. I have found out today...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday November 21,...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Nov 21, 2005 2:56 pm
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Ok well a few of my friends have managed to find a couple nice ones off this thing (this is the spot they mentioned to me:...
brylee.stevens1684@...
Dec 6, 2005 8:24 am
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday December 19,...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Dec 19, 2005 3:04 pm
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Sarah's Birthday Saturday...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Dec 24, 2005 5:43 am
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Merry Christmas! Sunday December...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Dec 25, 2005 5:50 am
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Yeah I know, I never really thought this stuff would work either, but honestly I stand totally corrected. This place...
brylee.stevens1684@...
Jan 12, 2006 3:44 pm
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Victoria's Birthday Monday...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Jan 16, 2006 5:41 am
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Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Group Chat Monday January 16,...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Jan 16, 2006 2:57 pm
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Well I just got engaged! I can't believe it, just last year I was beginning to think i would never meet anyone. I'm 25 already and I thought it was all over....
brylee.stevens1684@...
Jan 25, 2006 4:36 pm
504
My son is very large(both in height and weight). He's 6 1/2 and is 54 inches and weighs 97 pounds, size 7 shoe. IQ is above average, social skills suffered...
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...
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...
Hello I was reading this post, my son 4 Amos DX sotos and white matter disease and autism, had genetic testing done to confirm sotos, as I did I joind the site...
Hello a dx will get you alot actually, therapy,services,ssi if applicable,funding, waivers, adaptive equipment if need be ect.. Donna and Amos ... should not ...
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...
The boy on the front is undiagnosed also. But please hang around and keep posting here. Maybe answers will be on the way for you. Sarah (Mom of IReland...
Hi, I was wondering if Michael had been diagnosed yet? Also, how old is he. How old was he in the pictures with you and his dad? The reason I'm asking is...
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...
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...
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...
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...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Happy Valentines Day! Tuesday...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Feb 14, 2006 5:50 am
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I am the grandmother of a 2 year old little girl that was born with some sort of overgrowth syndrome. Noone has been able to diagnose her yet. She is of...
Welcome to the group. It is so frustrating not knowing which type of Overgrowth our children (grandchildren) have. It appears that there are more Overgrowth...
hi, are you in toch with the genetists? have they done any dna tests? i hope you get some answers,i know how frustrating it can be!! keep us informed,take care...
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 ...
miranda,just post when you can,weve all got busy lives! take care maxine uk finnedward98 <finnedward98@...> wrote: Hi Maxine/Susan I'm guilty of being...
Hi again Miranda Gosh how I can empathise with what you are saying. Dr Cole has now said that Shannon is "probably Sotos-like" and like you I don't feel any...
Hi Susan and Miranda! I agree that it stinks that we need to pay for our medical care by paying for medical insurance or pay out of pocket, but at the same...
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