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 Syndromes which are unknown, than those which have a name.
I am sorry I have not heard of the stomach tumours you mention. Are they
life-threatening? Bannayan-Riley-Rivucalva (last word might be spelled
wrong) has tumours as one of its features if I remember correctly, but I
would have thought the doctors would have picked this up as it is not
unheard of.

Susan UK


----- Original Message -----
From: "baylorsgrammy" <baylorsgrammy@...>
To: <UndiagnosedOvergrowthSyndromes@yahoogroups.com>
Sent: Wednesday, February 15, 2006 10:54 AM
Subject: [UndiagnosedOvergrowthSyndromes] Overgrowth unknown reason


>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 above average intelligence and beautiful. She has
> extremly large feet and legs up to the waist. One leg is larger than
> the other. She does walk rather well. She also has 3 very
> large "vascular" tumors in her stomach. The Dr. say's these are
> inoperable. One is the size of a football. Can anyone tell us wich
> direction to go in?
>
> Baylor's Grammy
> sandielee@...
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> Yahoo! Groups Links
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