yes, I've seen it happen before at the conferences (no not the monkeys). It's a hard thing because then you feel like you're back at square one. but sometimes the doctors can point you in the right direction of where to look next.

donna



----- Original Message -----
From: ccnvcabin@aol.com
To: Sotosyndrome@yahoogroups.com
Sent: Tuesday, July 14, 2009 12:33:10 PM GMT -07:00 US/Canada Mountain
Subject: Re: [Sotosyndrome] Bone age result

This is why I am thankful that we are going to the conference this year and have an appt. with Dr. Schaefer.  Like one of the other posts stated, unless a "qualified" technician or geneticist  is reading the films the result could be wrong - or something to that effect.  So I am making the LONG drive to pick up not only his bone age films but the MRI too so Dr. Schaefer can tell us if the written reports we got are accurate. 

 

After reading  A LOT of these posts over the past 2 years I think Hunter may fall into the "Sotos Mild" catagory, to use a word from Ed.  

He doesn't have all of the characteristics and he only has a few facial features, like the almond shaped eyes but his face is not shaped like most of the kids (his face is more rounded and he doesn't have a pointy chin).

He also is talking now.

 

I think maybe this may be all wishful thinking and what I am hoping is that Dr. Schaefer will say "I am happy to tell you this,  your son does not have Sotos and is perfectly normal".   

Yeah and then monkeys will fly out of my butt.

Has this ever happened before?  Not the monkeys part but parents finding out their child doesn't have Sotos?

 

Tammy C (Hunter age 4 1/2) 

 

 

                 

 

 

 

 

 

 

In a message dated 7/14/2009 11:13:48 A.M. Pacific Daylight Time, pamlepro@verizon.net writes:

Tammy,

It is listed as one of the 4 main criteria (I think it has been said that it is not necessary to have advanced bone age…I think someone heard that a conference or something) Kevin was 2 years advanced at age 2. 

Pam J   

I have never heard of that before.  Advanced bone age during the first 5 years is one of the characteristics of Sotos

 

----- Original Message -----

From: rodomier

To: Sotosyndrome@yahoogroups.com

Sent: Tuesday, July 14, 2009 11:27 AM

Subject: [Sotosyndrome] Contradictory X-Ray Result

 

Yesterday we were informed by the genetic counselor that genetic testing will take 4-6 weeks to get results but that the X-Ray from the hand/wrist showed bone age underdeveloped for chronological age (4.5 yr boy) rather than aged as documented for SOTOS. Please comment on this unusual finding...I am puzzled. What percentage of the children with sotos have this older bones feature? What about younger bones? Had any one experienced this with your children diagnosed with Sotos? Please share your experiences to try to make sense of this.

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