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...
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...
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...
Hi Maxine My computer has been down so I am just catching up with all the posts. Sorry to hear about your Grandmother, but so pleased you got to know her...
susan thanks for the email,i had wondered where you had dissapeared to!! how have you been,i hope well,and shannon,hows she doing? i hope well,regarding this...
I have had difficulty getting into this site recently and wonder whether anyone else has too. Anyway, I have just browsed through the membership list and...
hi everyone ,i gather some are having problems getting on here can someone e mail me on here and see if i can get it? apologies for not being around ,have been...
hi to any new members,we would love to hear your stories and offer any advice,or just listen! sometimes it goes fairly quiet on here so any new members would...
hi im liz and i have sotos sydrome, i was wondering if there has been a breakthrough in what causes sotos syndrome. is it the female gene or the male gene...
Does any one have a problem with their Soto child's behavior? If so, please tell me what kinds of medicines you have tried that seem to settle them down. I...
Hello...is there anyone out there who has problematic behavior with their Soto's child? If so, what medications have you tried that seem to work? I am having...
My son isn't diagnosed Sotos - results just came back negative - but we did have some problems with his behaviour. He was put on Dexedrine & it really seems...
Thanks Krystal. We are waiting on my son's results to come back, but he have most of the characteristics of Soto's. He's almost 5 and we still don't have an...
Hi Michelle, Our sons both have many characteristics of Sotos - except they have a round face & do not have advanced bone age. The next test being run is for...
Liz hi they have discovered there is a mutation or deletion in the NSD1 gene which I think is on 5q35 chromosome. If you are in contact with a geneticist they...
Hi, my name is Brenda and I have also seen the Discovery Health show on Archie. He looks so much like my son did at that age it was scarey. I might add that...
my son has gorlin syndrome he is 8yrs old. he is very large for his age. he also has digeorge syndrome. he has alot of headaches he also has some tumors on his...
Hi Demetria I am sorry I cannot help you as I don't know anything about your son's syndromes. Have you searched the internet to see if there are any support...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Candra's Birthday Monday August...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Aug 14, 2006 4:42 am
598
In honor of my baby's upcoming 4th birthday, I have made a movie about her birth. You can watch it by going to my 360 page (link below) and clicking on the...
Reminder from the Calendar of UndiagnosedOvergrowthSyndromes http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Ireland Campbell's Birthday ...
UndiagnosedOvergrowth...
UndiagnosedOvergrowth...
Sep 16, 2006 5:12 am
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Hello! My name is Maria and I have a son Liam who is 27 months old. A while ago I was a "lurking" member of the Sotos Group as I was suspecting that my son...
Hi Maria, This is Pam again.you may want to post this to the Sotos site as well. Sometimes there are others who lurk b/c the syndromes have similar ...
Undiagnosed Overgrowth Syndromes ... From: Krystal Germiquet<mailto:lovingmentalmama@...> To: No...
Krystal Germiquet
lovingmentalmama@...
Oct 29, 2006 5:38 pm
604
Hi Krystal, I think I have seen pics of your boys.. Maybe on the Sotos site?? I remember the name Liam. Was your husband's picture on there too? Maybe I'm...
Hi. I joined this group because my son Michael has an as of yet undiagnosed overgrowth syndrome. The neurologist mentioned Sotos syndrome and he has a lot of...
Hello! There are group of individuals who have many of the characteristics of Sotos, but may be missing some of the main criteria used in diagnosing Sotos, my...
Thank you for responding so quickly!! That clears up a lot actually. I believe that's what my son may have. I don't believe he has classic Sotos either, as...
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