SJS in the news

[Aaron Payne]

Here is a story of a child with SJS in the UK.

http://www.walesonline.co.uk/news/health-news/2009/11/13/brave-girl-whose-home-is-hospital-91466-25157198/

[debraca...@verizon.net]

Hi Everyone,

 

Thank you for that heartwrenching article.  Its just so rare we see anything at all about SJS. That was difficult to read.  I have a 4 year old son, Jack Diagnosed with SJS Type1. Recently he has developed a "tic" he bends his left elbow and makes a cirular motion around his left ear while holding the right arm out about shoulder height. He also will walk in large circles and groan and mumble noises.  His developmental ped and Neuro both believe it is due to a "neurological growth spurt" and "should go away" . I would love to know if anyone has experienced this.....any input is so greatly appreciated.

 

Thank you

Debbie Campbell     

Nov 16, 2009 07:55:03 AM, schwartz-jam...@googlegroups.com wrote:

[acke...@sbcglobal.net]

Hi Debbie:   Our five year old son also has SJS.  We have not had any symptoms as you have described.  Please keep us posted how it is going.  --- On Mon, 11/16/09, debraca...@verizon.net <debraca...@verizon.net> wrote:

--~--~---------~--~----~------------~-------~--~----~ You received this message because you are subscribed to the Google Groups "Schwartz-Jampel Syndrome" group. Visit the SJS Groups Webpage at http://groups.google.com/group/schwartz-jampel-syndrome?hl=en To post to this group, send email to schwartz-jam...@googlegroups.com To unsubscribe from this group, send email to schwartz-jampel-sy...@googlegroups.com -~----------~----~----~----~------~----~------~--~---