Hi,

OK – I don’t want to scare you…but Sotos can be inherited…have either of the parents been said to have Sotos?  Some people don’t find out they have Sotos until their children are diagnosed.  In many cases…Sotos syndrome is a sporadic mutation…and not inherited…sort of a fluke from what I understand.  Then again you seem to have some large people in your family too…heredity can affect height and weight in families without Sotos.    

There are some large (high weight and height) people with Sotos too not all of them are skinny.   

Regarding your daughter I looked up her weight and height in a book I have that has growth charts for boys and girls. 

19-20 lbs at 6 months is above 95% BUT 26 inches for height is 50-60% for a girl.  What was her birth weight and height?  What is her head circumference?    

My son weighed 22lbs at 6 months (over 95%) and was 29 inches long (over 95%).  He weighed 8lbs 11 oz at birth and was 23 inches at birth.  His head was 14+ inches at birth…today it is 1 inch smaller than mine and he is 5. 

If your son has been diagnosed as having Sotos didn’t doctors discuss the genetics of Sotos Syndrome with you?  As our geneticist told us…since neither my husband nor I have Sotos or any characteristics of it, it is unlikely we would have another child with Sotos Syndrome…BUT there are no guarantees when you are talking about genetics. 

I think you should post your questions to the yahoo group for Sotos Syndrome group…there are a lot of parents on that group (400+) and I bet you can get some helpful information from them and some guidance too.  They are a great group of parents!  The website is:    http://health.groups.yahoo.com/group/Sotosyndrome/    

Also you can have your daughter and son’s medical info sent to a Dr. Bradley Schaeffer at the University of Nebraska for his expert opinion.  He is the USA expert on Sotos Syndrome…and he will give his opinion FREE IF CHARGE!  He also attends the annual conference for the SSSA (Sotos Syndrome Support Association) and does exams during those conferences free of charge too. 

Who diagnosed you son and how did they come up with Sotos as his diagnosis?  Just curious. 

Take care,

Pam J

-----Original Message-----
From: Cynthia Hale [mailto:ccmhale02@...]
Sent: Monday, October 25, 2004 10:41 PM
To: UndiagnosedOvergrowthSyndromes@yahoogroups.com
Subject: [UndiagnosedOvergrowthSyndromes] just courious

I have noticed that most of the sotos kids are tall and very skinny
but am scratching my head because my son was labled sotos and is very
tall but also very large he is 3 and 3/4 years old stands 48 inches
tall and weighs 97 lbs but am now concerned for my baby who is 6
months and at last checkup was 26 inches long and 19 and 3/4 lbs
which I believe is high on the large side too does any one know if
this is heriaditary (I                                                                                                                                                                                                                                                                                                                                                                    can't spell) sure hope it looks right or what
the chances of both my children having the same situations. And the
chances if I have any more children them have the overgrowth too. I
also have a nephew who is 12 and is 5 foot 9 and weighs 235 lbs. I
need help if someone out there know of who I can contact or go to to
find the answers please let me know or if there by chance is someone
out there that can shed some light on the subject please by all means
do again thank you.