I have a sister, 24, who has Sotos Syndrome. She has a severe problem with her jaw that is going to require surgery to fix. My parents have taken her all over...
Hi donna, Out of network surgeries can be paid for by the insurance if the in network provider can't provide the surgery for her. Contact the insurance co.....
What gets me is that if they would just step up to the plate and take care of things for children when they are little, they might not have to pay so much when...
The insurance company should make concessions since no doctors in "their network" can perform the surgery necessary. They should eat the cost and not deny...
They don't think about that though. Tammy ... From: Kellie Siers To: Sotosyndrome@yahoogroups.com Sent: Wednesday, April 01, 2009 6:49 AM Subject: Re:...
Andrew, 33, has a tremendous lower jaw jutting out. We once considered surgery, but never got around to it. One of our dentist friends thinks it's his upper...
Laura's jaw dislocates completely when she opens her mouth and only partially relocates when she closes her mouth. It takes a few times of opening and closing...
Hi Donna, my son also has jaw problems (17 years old) We are trying to correct his jaw widen the narrow space on his upper chaw with braces. Which he has now...
Hey donna... Jacob had braces early on having an under bite. His lower jaw sat in front of his top teeth. Like a bull dog. After a jaw spredder and braces.....
That's vastly different from most Sotos Kids. Ed _____ Laura's jaw dislocates completely when she opens her mouth and only partially relocates when she closes...
One of the early parents in the SSSA, Dr. Jeff Cuffs, a St. Louis dentist, made a study of the problem. It is not real common, but it is there in many of the...
Hey Ed do you know if that dentist showed a lot of missing adult teeth in these kids? Kyle is missing 10 or 12 adult teeth they never developed so we might...
My son has a huge overbite - like a half inch difference in jaws. His bottom teeth are crowded but straight except his eye teeth are in front of the rest of...
See I think its a common thing to be missing adult teeth. But who knows! My dentist was shocked on how many Kyle actually was missing. Its made it very...
In second grade, Andrew (33) wore a sagital in his upper jaw to try to push the teeth out a bit. He hated it, and one time we found it under the sofa in three...
Hello, my name is Sonya and today I just found out that my son Dominic has Soto. It was shocking, but deep inside I knew there was something coming. This past...
I am new to this group, but I remember my son Dominic was told that he had no adult teeth in his x-rays so we needed to keep his baby ones as long as possible,...
Hey I was smart had them wire Kyles in. HE HATED it! But we got it widened and now its way better! Talk to you soon! Jeannette ... From: Ed St.Clair...
When Andrew (33) was 14, he was being teased until one day he announced to the bus and each classroom that he no longer wanted to be teased. He was the...
Jesse had a spacer inserted in his mouth to keep the space from a tooth that he had to have pulled. When that broke, and he was loosing the space anyway, they...
I did read that there is a possibility that they are missing some adult teeth. Tammy ... From: Jeannette VanDenberg To: Sotosyndrome@yahoogroups.com Sent:...
HI Sonya, Welcome to the group. My son, Jesse will be 8 on Monday and has Sotos. He was diagnosed 4 years ago. I joined the group the same day as well....
Thank you for your email.. it made me tear up and I know he is no different today than yesterday, just difficult for me right now. I do plan to keep talking...
You are very welcome. I understand how difficult it is for you right now, we all do. We have all been there. I get like that all the time, everytime I take...
Hi Sonya, Tammy put it so well! They are GREAT kids and we are lucky to have such special HUGE darlings! My son just turned 17 last week and its like hugging a...
Dear Sonya, Welcome to the group. My guess is that Dominic has a fairly mild "case" of Sotos syndrome. Most people discover that their child has Sotos before...
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