Hello everyone. I rarely post messages, but I do read every single digest. I wanted to share my story with you all since reading about your children is always...
Val, Daniel's Dr. attempted to fax it but my fax broke. She's going to send it through the mail. Will be a few more days. I"m glad to hear that Laura will be...
Just wanted to posted about Zachary and his kidneys. Other than a bout of croup at 13 months, he has been a very healthy kid. He was diagnosed with Sotos at...
Hi, I just found out that my 5 year old granddaughter, Natalie was diagnosed with Soto syndrome. Is there any thing that anyone can share to enlighten me on...
Here is the information that my Dr. promised to send on Sotos and heart conditions. She also sent some information on Cervical Spine instability as well. That...
Hi Sandy welcome to the group. There are lots of postings here which will gradually give you a take on things and everyone is very helpful and supportive with...
Thanks a lot for the article, Kellie. Very interesting reading. Just one question... I've been trying to find out how many people are affected by Sotos. The...
I just joined this group and appreciate all the welcome posts. I am grandma of Natalie age 5 1/2. She has a problem with speech, probably talking at a 2 or...
I just have to reply to this article from montreal. I dont understand how the ppl who wrote this article can say Sotos Syndrome is a "common" overgrowth...
Go to this link to find out more: You have to go to a local state park to get the application, I would take with me what ever you have that shows that the...
As I understood it from Dr Cole the incidence of Sotos is 1:15.000/ I sat and worked this out relative to the UK population and the number of people I knew of...
Yes eating is a big thing for some of the kids. I know I have to watch what we eat just because I do not want over weight to be an issue in adulthood. We are...
Hi Sandy - My daughter (age 11) was also diagnosed with sotos at Children's Hospital in Columbus. We live in Ohio and actually will be down in Columbus next...
... I think the key word is "reported". That just means 250 cases have been written up in medical papers worldwide. The Sotos Syndrome Support Association...
Sandy, She has a huge appetite also. Is that normal? My son Daniel eats in streaks. When he hits a growing stage he eats a lot and during times like now he...
Hi all! Haven't been on for a while - computer crashed! Have a new one now - YEA! In regards to heart problems, Emily was born with congenital heart disease....
Hello, I happened to catch the discussion about incidence of Sotos syndrome. When the statement was made that Sotos was a relatively common overgrowth...
Natalie goes to a school called "Flying Colors", it is a good school and she receives speech therapy, physical therapy and occupational therapy. She has...
Hello all... It's been a very long time but finally have a computer that agrees with me!! My son Ryan ( 7yr 6mths) has never formally been diagnosed but ...
Hi Lynn, I don't know the answers yet about the teeth, but we have the same problem. We do have a children's hospital here in Delaware, so we have been...
thanx lori..great news with the horses. Ryan has taken a new interest in karate, and loves soccer!! Ryan has gone to the dentist and does open his mouth (...
Hi, My 6 1/2 year old son Elijah is diagnosed with Sotos Syndrome. Friday he went in for an ultrasound to check for tumors, he did not have any, but he does...
HI! I HAVEN'T HEARD ABOUT GALLSTONES BEING ASSOCIATED WITH SOTOS BUT I( NON SOTOS) MYSELF WILL BE HAVING MY GALLBLADDER REMOVED ON FRIDAY DUE TO GALLBLADDER...
Sorry I am new to being in a group like this. Is there anyone in this group thats in my area i Could talk to? I live in New Hampshire. I did post a pic of...
WHERE IN NEW HAPSHIRE ARE YOU?? I'M IN NH TOO!! WE ARE IN SOMERSWORTH! ricebake5 <ricebake5@...> wrote: Sorry I am new to being in a group like this. Is...
Hello all, How prevalent is Asperger's in children with Soto's Syndrome? I remember someone mentioned that their child had Asperger's. Is rapid- cycling...
Ok, I hope I am not driving you all crazy with questions....I am wondering how much of what I am seeing my my children is Sotos, and what does not seem to be...
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