Hi!! My name is Amy and I joined this group because my son Chance was born with several rare brain anomalies, some affecting the hormones he produces. Up until...
I have not yet had my son diagnosed for Sotos, but have been quietly investigating this syndrome. My son will be 4 soon and continues to drool excessively....
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 Wahine Welcome to the group. My daughter Shannon is 9 and her diagnosis is Unrecognised Overgrowth Syndrome. This means that although she has just about...
don't know if the last post made it.....so here goes again....my daughter is now 10 and for 7 years I have beat my head against a wall (along with the school...
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...
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...
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, 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...
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...
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...
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...
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...
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...
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...
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 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...
I saw a show last night on the Discovery Health Channel about a little boy who weighed 84lbs when he was two who lived in the UK. Something with his story...
Hi guys, I am Sarah, moderator of this group. My daughter has Sotos but I started this group because we didn't know for the first year, and I realized after...
hi everyone,i was browsing and thought id post in and see how everyones doing,its been quiet on here so i thought id say hello,see how everyones doing,we arent...
Note: forwarded message attached. We had our genetics appt today at Sick Kids and they think it's Soto Syndrome. Blood work was done, as was an X-ray for bone...
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...
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...
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