Please send me a link to get off this message board. I can't read this much mail. I don't have the time. I end up deleting everything. Please, Please, Please...
Joeylarue1@...
Jan 1, 2003 2:27 pm
15410
SOME ONE PLEASE SEND ME THE LINK AS WELL. This is far too much mail for me to handle.....
Candyq1129@...
Jan 1, 2003 4:11 pm
15411
Hi everyone who responded. I'm not sure when it started but Devin was never able to lie when he was younger either. Sometimes perceptions were a little off...
no, that is the Sotos Syndrome Support Association website. go to Yahoogroups.com where you signed up for this, and there should be instructions to remove...
I have a stroller from a company called Convaid. Its ordered though your local DME provider or hospital. Depends on your insurance. Blue Care Network...
Joan, You have to go into your Yahoo options and change your settings for email (I don't know how to send links.. sorry).....and then you can control how much...
I understand what you mean... There are so many reasons why I have that stroller.... I just can't lift or drag 48lbs of pissed off kid.....lol... I understand...
Hi everyone, Hope everyone had a good new years eve last night, and recovery is swift. ;) Emo, (classic, almost 9) does lie, but not about much. Like any...
Just thought I'd say some things I've learned about the use of strollers. We've been carrying out an intensive home therapy program with Johnny (originally...
I don't think I would completely get rid of the stroller. I would use it at "have to" times. We have a very busy schedule with my kids and always on the go...
I know this is a support group and after reading everyone's problems it can sometime be overwelming, so I would like to share encouragement for parents who...
Sounds like you are doing all the right things for your advanced Sotos child. Alex was a little older when she started doing all that, but now she is 7, in...
My 2 1/2 year old daughter was just diagnosed with Sotos December 17th after having the gene test. The doctor sent a blood sample to a lab in Chicago and they...
Below is copied directly from the SSSA website (listed at the bottom of all thses postings). 1.. The question is whether this NSD1 gene in the 5q35 region is...
was this NSD1 test the only test used to determine if your child had Sotos? Tracey ... From: rbryner <rbryner@...> To: Sotosyndrome@yahoogroups.com Sent:...
Yours is the first genetic test for the NSD-1 gene that I've heard of that was not part of a research study. It's great that your doctor was savvy enough to...
Thanks for sharing Dawn. I have read many posts that have given me more hope. And as I see LJ progress I know things are going to be ok. At 19 months he ...
have you applied for state programs? aide? there is so much out there that you really have to dig to find. what state do you live? check with the ARC. ... ...
Yes, I've been checking all the state programs, etc. Unforunately, I live in Los Angeles....way too many people. Not to mention, when you have a decent income ...
The doctor suspected Sotos in the beginning just from my daughter's appearance and symptoms. So the diagnosis was based on a combination of observed symptoms...
Actually, I think the test may have been part of a research study. I remember having to sign some forms because of that. We were surprised when the bone age...
Thank you Claudia for your angle. I have not heard of the program your Johnnie has been in. I only use the stroller for malls and museums. Other than that,...
ARC- formally know as the Association of Retarded Citizens.... Now they are mainly for the developementally disabled/delayed. Provides support and advocacy. ...
Thats what i got gabby for christmas. a mens electric razor and she loves it ... From: <holaus@...> To: <Sotosyndrome@yahoogroups.com> Sent: Monday,...
vicki padgett
vpad61@...
Jan 3, 2003 12:32 am
15436
... From: Dave Miller Sent: Tuesday, December 31, 2002 8:46 AM Subject: [Fwd: Fwd: Fw: Tribute to Rose] The first day of school our professor introduced...
vicki padgett
vpad61@...
Jan 3, 2003 12:32 am
15437
Another member wrote: "I guess I don't understand why you say that the gene test can't confirm a diagnosis of Sotos. It seemed to confirm it in my daughter's...
Unfortunatly not all children with brain injuries or damage are able to walk. It is great to have them walk with their walkers as much as posibly, but...
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