That is wonderful that it is working for you and your family. I guess I would like to hear this maybe re-phrased as, "in many cases, a parent can teach their...
I met Claudia in Chicago and she recommended Doman's book. I bought it before I left Chicago and am about half the way through. It has some extremely good...
I just checked with Dr. Schaefer and his estimate of the occurrence of Sotos syndrome in the general population is 1 in 10,000 to 20,000. Therefore, my...
Carla -- you are so right! We need to be aware of how our comments affect others. I might add to your re-phrase ("in many cases a parent can teach their child...
Walt, I remember this conversation last year happening on the podium between Dr. Schaffer and Dr. Cole... Dr. Cole believes it is more like 1 in 60,000 to ...
Walt and Donna: I remember the estimation from last year as well being 60,000 - 100,000 births. Walt, did you say that you spoke to Dr. Schaefer and it's now...
Hi Jennifer, I always thought "Sotos-Lite" meant the same as "Sotos-Like". I was told by our geneticist who deferred to Dr. Schaefer when dx-ing my son that...
I thought that someone on this list, a long time ago, used the term Sotos-lite (describing kids that are not greatly affected by the problems that Sotos can...
I came up with the term "Sotos-lite", partly for a little humor, and partly for grammatical purposes. In our "lite"-obsessed U.S. culture, I hope the levity is...
Can someone write back to the board with more info about the flashcards and Doman's book? I'm not sure what you guys are talking about, but it sounds...
Dear Pam and the rest of the wonderful folks on this site: There is no medical term of "Sotos-Lite". The two Sotos diagnoses are "Classic Sotos" and...
We had a GREAT time at the conference, only wished we could have visited with more people, we're already talking about going next year. Dr. Schaefer officially...
... flashcards and Doman's book? I'm not sure what you guys are talking about, but it sounds interesting. We couldn't make it to the conference. ... Sonya,...
As a first time attendee, I would like to reflect on the wonderful experience we had at the Conference. Thanks to all of the organizers as well as Drs....
My Son Taaj is 5 with Sotos. He has been examined, studied and tested a lot. But Taaj still can't use pecks, or sign. The only way he communicates is via load...
My 15 year old daughter has been diagnosed as having Soto's. She has just started having seizures (fits) for no apparent reason (there are no family links...
Well, I guess the only question I have at this point is this. Do children with Sotos have a lot of white matter in their brain????? When Jacob had his MRI...
Hello Rita: I know in my case our son Joseph (22mos.) has been described as having too little white matter (myelin) in certain areas of the brain. Best wishes...
Hi Jay, my son ,nearly 12, has no speech at all either. But he now uses PECS well, and can read some words. The way to start, before you begin with PECS is...
Is it possible that she has been having the silent type, Petit Mal type seizures before now? Alex had those and you don't realize anything is happening until...
My son, Johnny 5 ½, is also nonverbal and the means we use for communication are words. We did the PECS and sign language and started off well with them, but...
Hi Jay, My son uses PECS, but is not always made to hand the pic over to someone to get what he wants (age 4). He has a small binder with PECS pics in it and ...
does anyone use a voice output device for communication?David has had one for a trial this summer, the Dynamo. Its a step up from the PECS- in-a book format....
Rita- Here is the mailing address you are inquiring about: Dr. G. Bradley Schaefer, MD Monroe-Meyer Institute 985440 Nebraska Medical Center Omaha, NE...
Good assesment Lilianne, Funny the differences between the classic and like Sotos children. Jacob has the round little face and stocky features.. although he...
My sister who is non-verbal uses a Dynavox, which is a step up from the Dynamo. I have learned to program it to make the sentences, phrases and individual...
Hi Everyone!!! The 16th annual Sotos Syndrome Support Association Conference held in Chicago went off in July with great success. The two day conference drew...
Our daughter, Katie has a Dynamyte, which is small like a Dynamo but has the full functions of a Dynavox. Her first device was a Dynavox but it was heavy and...
Hello everyone. I am reading the posts regarding Classic Sotos and Sotos-Like and something comes to mind that I want to make sure isn't misunderstood .......
