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...
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Aug 14, 2006 4:42 am
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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 ...
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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
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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...
Hi Vanessa My daughter Shannon aged 9 has a diagnosis of Unrecognised Overgrowth Syndrome. This means that although she shows just about every characteristic...
Hi Vanessa, You are most welcome!!! Believe me, I understand what you mean about these sites.when I found the Sotos group 4 years ago.it was a lifeline. We...
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 Marcie I am so pleased you have at last found an answer to your daughter's problems. I thought you might like to know there is a specific website for...
Reminder from: UndiagnosedOvergrowthSyndromes Yahoo! Group http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Sarah's Birthday Sunday December...
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Dec 24, 2006 5:42 am
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Reminder from: UndiagnosedOvergrowthSyndromes Yahoo! Group http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Merry Christmas! Monday December...
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Dec 25, 2006 5:51 am
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Reminder from: UndiagnosedOvergrowthSyndromes Yahoo! Group http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Victoria's Birthday Tuesday January...
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Jan 16, 2007 6:24 am
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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....
I'm sorry but it doesn't sound like my 4 year old, who does have Sotos. The main differences are that my child stopped excessive drooling at around 2 or early...
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...
Hello, My son drooled until he was about 4. He is still undiagnosed. I'm familiar with Sotos because he has similar issues. There used to be an awesome website...
Hi Maria sorry I dont post often here, but just wondered have they said that the other name for Bannayan Zonana could be Bannayan Riley Ruvalcaba syndrome? Not...
hi julie, thank you for your response. could you tell me more about the gluten and casein free diet? thanks, Wahine Julie Younger <jyounger@...> wrote: ...
Hi Krystal I was really interested to see your lovely photos. Your pictures, from the eyes upwards, of Liam, and of Rowan when younger (but not the latest...
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...
Reminder from: UndiagnosedOvergrowthSyndromes Yahoo! Group http://groups.yahoo.com/group/UndiagnosedOvergrowthSyndromes/cal Happy Valentines Day! Wednesday...
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Feb 14, 2007 5:51 am
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I can't say that I notice a shelf or ridge on their forehead. However, I do notice an "odd" shape to the back of Liam's head. Testing for Rowan, Aidan & their...
